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The Influence of Spirituality, Race/Ethnicity andReligion on Parent Grief and Mental Health at onemonth and three months after their Infant's/Child'sdeath in the Neonatal or Pediatric Intensive CareUnitDawn M. HawthorneFlorida International University, dhawt001@fiu.edu

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Recommended CitationHawthorne, Dawn M., "The Influence of Spirituality, Race/Ethnicity and Religion on Parent Grief and Mental Health at one monthand three months after their Infant's/Child's death in the Neonatal or Pediatric Intensive Care Unit" (2012). FIU Electronic Theses andDissertations. Paper 591.http://digitalcommons.fiu.edu/etd/591

FLORIDA INTERNATIONAL UNIVERSITY

Miami, Florida

THE INFLUENCE OF SPIRITUALITY, RACE/ETHNICITY AND RELIGION ON

PARENT GRIEF AND MENTAL HEALTH AT ONE AND THREE MONTHS AFTER

THEIR INFANT’S/CHILD’S DEATH IN THE NEONATAL OR PEDIATRIC

INTENSIVE CARE UNIT

A dissertation submitted in partial fulfillment of the

requirements for the degree of

DOCTOR OF PHILOSOPHY

in

NURSING

by

Dawn Hawthorne

2012

ii

To: Dean Ora Lea Strickland College of Nursing and Health Sciences This dissertation, written by Dawn Hawthorne, and entitled The influence of Spirituality, Race/Ethnicity and Religion on Parent Grief and Mental Health at Time One and Three Months After Their Infant’s/Child’s Death in the Neonatal or Pediatric Intensive Care Unit, having been approved in respect to style and intellectual content, is referred to you for judgment. We have read this dissertation and recommend that it be approved.

__________________________________

Dorothy Brooten

___________________________________ Anahid Kulwicki

___________________________________

Whitney Bauman

___________________________________ JoAnne M Youngblut, Major Professor

Date of Defense: March 29, 2012

This dissertation of Dawn Hawthorne is approved.

___________________________________ Dean Ora Lea Strickland

College of Nursing and Health Sciences

___________________________________ Dean Lakshmi N. Reddi

University Graduate School

Florida International University, 2012

iii

DEDICATION

I dedicated this dissertation to my daughter and granddaughter who provided

meaning and purpose to a changing and challenging period of my life. This dissertation is

also dedicated to my brother Howard, sister-in-law Bernice and best friend Judith whose

support during times of adversity was immeasurable.

iv

ACKNOWLEDGMENTS

This thesis would not have been completed without the financial support from the

Research Supplement to Promote Diversity in Health-Related Research, National

Institute of Nursing Research, NIH, 3R01 NR0091120-S1 from the Main grant by Dr J.

Youngblut and Dr D. Brooten. Thank you to Dr JoAnne Youngblut, Priniciple

Investigator and Dr Dorothy Brooten Co-Principle Investigator of the Parent and Family

Functioning study for working with me to obtain a grant that financially supported my

research. Also their continued supervision, guidance and the extraordinary experiences

that was obtained while working as a research assistant on the main study has helped me

develop a passion for research.

I especially want to recognize Dr JoAnne Youngblut, Chair of my committee. It

has been a memorable journey. Her excellent guidance, caring, patience and crucial

contribution from the early stage of this research has made it possible for the thesis to be

completed. It has been an honor and a pleasure in working with Dr Youngblut who has

my highest respect as a mentor, researcher, teacher and friend.

I would like to thank my committee members Dr Dorothy Brooten, Dr Anahid

Kulwicki and Dr Whitney Bauman for their expertise and time throughout this

dissertation. My deepest gratitude goes to Carmen Caicedo, my classmate and good

friend who has been extremely supportive and helpful. It would have been a lonely

journey without her. I am also grateful to Lyn Seagrave, Donna Charles and Nathalia

Bauer for their support, encouragement and help on the project which was valued.

Finally, I would thank my family and friends for their love and support. Most

importantly I thank God for holding my hand throughout this memorable journey.

v

ABSTRACT OF THE DISSERTATION

THE INFLUENCE OF SPIRITUALITY, RACE/ETHNICITY AND RELIGION ON

PARENT GRIEF AND MENTAL HEALTH AT ONE AND THREE MONTHS AFTER

THEIR INFANT’S/CHILD’S DEATH IN THE NEONATAL OR PEDIATRIC

INTENSIVE CARE UNIT

by

Dawn Hawthorne

Florida International University, 2012

Miami, Florida

Professor JoAnne Youngblut, Major Professor

The death of an infant/child is one of the most devastating experiences for parents

and immediately throws them into crisis. Spiritual and religious coping strategies may

help parents with their loss. The purposes of this longitudinal study were to: 1) describe

differences in bereaved parents’ use of spiritual coping strategies across racial/ethnic and

religious groups, mother/father dyads, and time – one (T1) and three (T2) months after

the infant’s/child’s death in the neonatal (NICU) or pediatric intensive care unit (PICU),

and 2) test the relationship between spiritual coping strategies and grief, mental health,

and personal growth for mothers and fathers at T1 and T2. A sample of 126 Hispanic,

Black/African American, and White parents of 119 deceased children completed the

Spiritual Coping Strategies scale, Beck Depression Inventory-II, Impact of Events-

Revised, Hogan Grief Reaction Checklist, and a demographic form at T1 and T2.

Controlling for race and religion, spiritual coping was a strong predictor of lower grief,

better mental health, and greater personal growth for mothers at T1 and T2 and lower

vi

grief for fathers at T1. The findings of this study will guide bereaved parents to effective

strategies to help them cope with their early grief.

vii

TABLE OF CONTENTS

CHAPTER PAGE

CHAPTER I INTRODUCTION......................................................................................... 1 Purpose............................................................................................................................ 1 Significance .................................................................................................................... 3

Parent NICU/PICU experiences.................................................................................. 3 Parents coping with NICU/PICU hospitalization and death........................................... 7 Religion and Spirituality............................................................................................... 11

Religion..................................................................................................................... 11 Spirituality .................................................................................................................... 12

Use of Spirituality/Religion as a coping strategy ..................................................... 15 Research Questions....................................................................................................... 17 Conceptual Framework................................................................................................. 18

CHAPTER II REVIEW OF THE LITERATURE............................................................ 21

Grief in Bereaved Parents ............................................................................................. 22 Parents mental health and personal growth .................................................................. 43 Spiritual coping strategies and bereavement ................................................................ 49 Gender differences and spiritual coping strategies ....................................................... 67 Summary....................................................................................................................... 77 Issues and gaps in the research ..................................................................................... 80

CHAPTER III METHODS............................................................................................... 84

Abstract of larger study................................................................................................. 84 Setting and Sample ....................................................................................................... 85

Inclusion criteria ....................................................................................................... 85 Exclusion criteria ...................................................................................................... 86

Dissertation ................................................................................................................... 86 Sample....................................................................................................................... 86 Procedure .................................................................................................................. 86 Dependent Variables Measures................................................................................. 88 Independent Variable Measures................................................................................ 91 Demographic information......................................................................................... 92

Data Management and Analysis ................................................................................... 93 CHAPTER IV RESULTS................................................................................................. 95

Description of the sample ............................................................................................. 95 Differences in the use of Spiritual Coping Strategies................................................... 99

CHAPTER V DISCUSSION.......................................................................................... 112

Discussion of Findings................................................................................................ 113 Significance ................................................................................................................ 120 Limitations of the Study ............................................................................................. 122

viii

Implications for Nursing............................................................................................. 123 Future research............................................................................................................ 124 Summary..................................................................................................................... 125

REFERENCES ............................................................................................................... 126 VITA............................................................................................................................... 135

ix

LIST OF TABLES

TABLE PAGE

Table 1 Description of parents......................................................................................... 96 Table 2 Description of deceased child and family........................................................... 98 Table 3 Differences in mothers’ use of spiritual coping strategies by race/ethnicity and religion ............................................................................................................................ 100 Table 4 Differences in fathers’ use of spiritual coping strategies by race/ethnicity and religion ............................................................................................................................ 101 Table 5 Mother-father and cross time differences in use of spiritual coping strategies 103 Table 6 Correlations of mothers’ use of spiritual coping strategies with grief, personal growth and mental health at 1 and 3 months after the infant’s/child’s death ................. 104 Table 7 Correlations of fathers’ use of spiritual coping strategies with grief, personal growth and mental health at one and three months after their infant’s/child’s death ..... 105 Table 8 Effects of mothers’ use of spiritual coping strategies on grief at 1 and 3 months after their infant’s/child’s death ...................................................................................... 107 Table 9 Multiple regressions of mothers’ mental health and personal growth.............. 109 Table 10 Multiple regressions of fathers’ grief and personal growth............................ 110 Table 11 Multiple regressions of fathers’ mental health ............................................... 111

1

CHAPTER I

INTRODUCTION

The death of a child is unimaginable since most parents expect not to outlive their

children. In 2008 over 50,000 infants (0-1 year old) and children under the age of 18

died in the United States with 28,033 representing infant deaths of which two-thirds

occur in the neonatal period and 22,844 deaths occurring to children and adolescents

ages 1 to 19 years old (Matthews, Minino, Osterman, Strobino & Guyer, 2011). More

than half of all infant deaths were attributed to congenital malformation (20.1%),

complications of prematurity (16.9%) and sudden infant death syndrome (8.2%).

Children and adolescents ages 1 to 19 years died as a result of accidents (unintentional

injuries) (38.8%), homicide (12.4%) and malignant neoplasms (8.6%) (Matthews et al.,

2011). The death of an infant/child is one of the most devastating experiences for

parents and immediately throws them into crisis. The stress created by this traumatic

event disrupts their mental and physical health resulting in physical and emotional

symptoms both during the early phase of grieving and for several years afterwards

(Lohan & Murphy, 2005-2006; Meert, Thurston, & Thomas, 2001; Song, Floyd, Seltzer,

Greenburg, & Hong, 2010). In response to their child’s death, bereaved parents often

exhibit numbness, shock, despair, acute distress, anger, and loss of control (Aho,

Tarkka, Kurki, & Kaunonen, 2006; Bellal & Papadatou, 2006; Laakso & Paunonen-

Iimonen, 2001).

Purpose

The purposes of this longitudinal study are 1) to describe differences in bereaved

parents’ use of spiritual coping strategies across racial/ethnic and religion groups,

2

mother/father dyads and time at one and three months after the infant’s or child’s death in

the neonatal intensive care unit (NICU) or pediatric intensive care unit (PICU) and 2) to

test the relationship between spiritual coping strategies and grief, mental health, personal

growth for mothers and fathers separately at one and three months post death.

Parental grief has been described as a devastating and traumatic experience that

generates negative feelings, consumes energy and disrupts parents’ emotional and social

world, causing severe and even prolonged emotional and physical distress (Klass, 1997;

Laakso & Paunonen-Iimonen, 2001; Meert, Thurston, & Briller, 2005; Meert, Thurston,

& Thomas, 2001;). In response to their grief, bereaved parents may choose to use

spiritual strategies to cope with their loss. Spirituality involves caring for the human

spirit; achieving a state of wholeness; connecting with oneself, others, nature and

God/life forces; and an attempt to understand the meaning and purpose of life (O’Brien,

2008; Parks, 2000, Schneiders, 2003). Through spirituality the individual may find

meaning and purpose in the most difficult of circumstances. Being able to transcend

one’s situation beyond despair to focus instead on finding meaning even in the face of

tragedy is recognized as a vital coping strategy (Lyon & Younger, 2001).

Spirituality has been identified as being very important in coping with grief and

illness. Research on spirituality as a coping strategy has demonstrated its ability to help

people achieve a state of wholeness or equilibrium and to evoke healing practices (Chiu,

Clarke, & Daroszewiski, 2000; Tuck, McCain, & Elswick, 2001; Woods & Ironson,

1999). Additionally, spirituality can be a source of support to alleviate the stress

associated with a traumatic event, to provide the individual with inner strength, to heal

the spirit, to make sense of the experience and to move forward (Glass, 2007).

3

Bereaved parents may rely on religious or spiritual beliefs throughout the period

of grieving to obtain comfort, create meaning from the loss, and help in the healing

process that will ultimately result in a resolution of their grief (Amentrout, 2007; Klass,

1999; Meert, Thurston, & Briller, 2005). Spiritual beliefs and faith may serve as a

counterforce to the despair and negativity associated with death and illness and provide

hope and direction for a positive outcome (Benson, 1996; Wilson & Miles, 2001).

Significance

Parent NICU/PICU experiences

The NICU and PICU are specialized units that care for infants and children with

critical and life threatening illnesses or injuries. Although the aim of these units is to

restore health to critically ill children, approximately 80% of infant and childhood deaths

within the hospital occur in the intensive care unit (Angus et al., 2004). Deaths in the

NICU are attributed to complications of extreme prematurity, as well as chromosomal

and congenital anomalies. For children admitted to the PICU, accidental injuries,

congenital malformation, malignant neoplasms and homicide have been reported as the

leading cause of death (Matthews, et al., 2011). An infant’s/child’s admission, stay and

subsequent death in the NICU/PICU is recognized as overwhelming and painful for

parents as they are often faced with the difficult decision of limiting or withdrawing life

support from their very sick infant/child (Carter, Hubble, & Wise, 2004).

Infants admitted to the NICU are often born at the edge of viability (22-25 weeks

gestation weighing below 600 grams). Some develop complications related to

prematurity or have congenital or chromosomal anomalies which require their parents to

make difficult decisions about their care. Singh, Lantos, and Meadow (2004), over a three

4

year period, identified 155 infants who had died in the NICU; in 78 (50%) of these

deaths, orders to withhold or withdraw life support and do not resuscitate (DNR) were

written on their charts. Withdrawal of life support occurred with premature infants whose

medical conditions had deteriorated despite maximum ventilator and treatment support.

Neonates who were hemodynamically and medically stable (40%) but had devastating

diagnoses of trisomy 13, holoprosencephaly, severe intraventricular hemorrhage and

severe asphyxia were removed from the ventilator for quality of life reasons. For these

infants the neonatologist’s and the parent’s decision was guided by the prediction of the

infant’s poor quality of life based on their neurologic status.

Parental involvement is important in the decision making process when the

decision to withhold or withdraw life support is being considered (McHaffie, Lyon, &

Hume, 2001; Singh, et al., 2004). McHaffie et al. (2001) interviewed 108 Scottish parents

three to13 months after the death of their infant in the NICU. Most of the deaths occurred

in the first week of life as a result of extreme prematurity and complications of

prematurity. The majority of parents reported that the discussion to withdraw life support

was initiated by the neonatologist within a few days of birth and multiple meetings were

held between the physician and the parent(s) before a decision was reached. Many

parents (56%) felt that they had made the decision to limit or withdraw life support and

13.9% felt that the decision was made jointly with the physician. The parents identified

several factors that assisted them in making their decision including watching their

infant’s condition deteriorate and wanting to minimize their infant’s suffering.

Information from the physician that identified a poor prognosis and outcome for the

infant also affected the parent’s decision to limit or withdraw life support. Three months

5

after the death, 88% of mothers and 89% of fathers felt confident that they had made the

correct decision, but of the 108 participants, one mother and three fathers felt the decision

had been wrong. Six mothers and two fathers expressed some misgivings as they felt

inadequately prepared to assess the information they received regarding the poor

prognosis of their infant. Parents who were dissatisfied felt that their decision was made

too quickly.

The suffering experienced by the deceased infant/child was identified by many

bereaved parents as a major contributor for their decision to remove their infant/child

from life support (McHaffie et al., 2001; Sharman, Meert, Ashok, & Sarnaik, 2005;

Wocial, 2000). Armentrout (2007) interviewed 15 bereaved parents whose infants (25-41

weeks gestation at birth) had died in the NICU following their decision to withdraw life

support. Diagnoses included extreme prematurity, congenital anomalies, anoxia, and

sepsis. When the decision was made to withdraw life support the infants ages ranged

from 2 to 12 days and death occurred within 2 minutes to 6 hours following removal from

the ventilator.

All bereaved parents stated that they knew their infant was suffering and there

was no hope for survival. Some bereaved parents described their decision as an act of

kindness as the baby was slowly dying and was being kept artificially alive with no hope

for a cure or full recovery from their illness. They believed that continuing with

mechanical ventilator support and medical care was an act of selfishness. All bereaved

parents felt that they had exhausted all their options regarding medical care and their

decision was in the best interest of the child.

6

Additionally, the decision to remove the infant from the ventilator allowed many

bereaved parents to bathe and dress their infants. Many who had not previously held their

infant were now able to hold and talk with their infant without tubes and wires as death

occurred. This was described by the bereaved parents as a time of peace where the family

could be together (Armentrout, 2007).

Similar studies also found that parents of infants who had died in the NICU and

PICU expressed similar feelings of the importance of participating in end-of life

decisions. Receiving support from family, friends and healthcare professionals; actively

participating in caring for their dying child; being present at the time the death occurred;

and having a supportive environment were seen as being helpful in coping with their grief

(Kavanaugh, Savage, Kilpatrick, Kimura, & Hershberger, 2005; Meert, Briller, Myers-

Schim, Thurston, & Kabel, 2009; Meyer, Ritholz, Burns, & Truog, 2006; Sharman et al.,

2005; Wocial, 2000).

Brosig, Pierucci, Kupst, and Leauther (2007) interviewed 19 bereaved parents. Of

these, 14 (76%) had had an infant or child die either in the NICU or PICU, 4 (19%) in the

pediatric ward and 1 (5%) infant at home. Irrespective of the unit where the death

occurred, parents identified honest, open communication from healthcare professionals

and the need to be involved in the decision making process, especially regarding the

withdrawal of life support, as important. These factors affected how parents felt about the

overall end-of-life care that their child received. Parents who expressed anger with the

healthcare team felt that they were not informed about options to complete a DNR form

or that their decision to withdraw life support measures was not respected. This had a

negative effect on their evaluation of the quality of their child’s overall end-of-life care.

7

Parents coping with NICU/PICU hospitalization and death

Studies on death in the NICU/PICU have predominately investigated parents’

decisions to limit or withdraw life support with limited studies on emotional expenditure

and coping strategies used by parents during their infant’s/child’s hospitalization and

subsequent death in the NICU/PICU. Meert et al. (2009) interviewed 33 bereaved

parents between 10 months and 3.5 years after their child’s death in the PICU. Their

focus was to identify parent needs from the time of their child’s hospitalization to when

the death occurred. Four themes emerged: 1) Who I am, 2) While my child is dying, 3)

My child’s death context and 4) My bereavement journey.

The theme of “who I am” referred to ways that bereaved parents defined

themselves and how that influenced their needs during the death of their child (Meert et

al., 2009). Maintaining a relationship with their child during the illness, when death was

imminent and after the death was very important to these bereaved parents. Being present

to hold and touch their child during the dying process was paramount. Presence allowed

the parents to function in their role as parents which included participating in the child’s

care and assuming an authoritative role in decision making. All of these attributes were

considered important contributions to caring for their child.

The second theme identified by Meert et al. (2009) was “being present during the

death” of their child. Parents placed great emphasis on the need to say good-bye to the

child as death became imminent. Expressions of good-bye rituals such as baptism,

sacrament and giving the child permission to die were comforting for many bereaved

parents. Support from families, friends and hospital staff was described by the bereaved

parents as comforting and helped them come to terms with their child’s death. Support

8

was also described as positively helping those parents with their decision to limit or

withdraw life support.

Meert et al. (2009) described the third theme, “my child’s death,” as including the

environmental support within the PICU. Creating a private space and a sacred

atmosphere, providing enough time for parents to be alone with their dying child, having

privacy that allowed family members to be present, and also allowing parents to be alone

with their deceased child were identified as being very important to bereaved parents.

Failure to provide these services resulted in unhappiness and a deep sense of loss for

some parents in both the early and long term phases of their bereavement.

The fourth theme that emerged from the Meert et al. (2009) interviews was “my

bereavement journey” for the parents after the death of their child. During this period,

support from family and friends was reassuring and helpful for some bereaved parents

and unhelpful for others especially when the topic of the child’s death was avoided.

Professional support was also described by some parents as being comforting especially

if they were able to speak with other bereaved parents. Maintaining contact with the

PICU staff was seen as a gesture of caring and acknowledgment of their grief.

Bereaved parents used several coping strategies to help them through this

devastating time. Family support that was described as helpful included their assistance

with the care for other children at home and being present with them at the hospital, at

home, when the child died, and also when making decisions to withdraw life support.

Some family members’ support was described as not being helpful when they tried to

minimize the parents’ talking about the deceased child. Another theme found to be

important to bereaved parents was keeping the memory of the deceased child alive. This

9

was accomplished through keeping of memory boxes that contained personal items of the

deceased child, planting a tree in memory of their deceased child, and creating rituals

such as celebrating their deceased child’s birthdays (Meert et. al. 2009).

Another coping strategy (Meert et al., 2009) that bereaved parents found helpful

in coping with the death of their child was to refocus their lives by keeping busy in caring

for their other children, engaging in altruistic endeavors such as participating in

fundraising activities that benefited the hospital and being involved in a bereavement

support group. Receiving the autopsy report for many parents was helpful as the

information validated their decision to withdraw life support.

Similar findings were reported by Rini and Loriz (2007) who interviewed 11

bereaved parents, nine mothers and two fathers, to determine their grief reaction, 4

months to 2 years after the death of their child in the NICU (2), PICU (8) and on the

general pediatric floor (1). Length of stay in the hospital ranged from less than a day to 4

weeks and the diagnoses included prematurity, drowning, heart disease, respiratory/

kidney failure and terminal illness. Themes that emerged emphasized the health care

team’s role of providing in-depth information to parents as to why their child would not

survive and allowed them to be better prepared in accepting the inevitability of death.

Attitudes and actions of the health care team were critical in assisting parents who

expressed an awareness that their child would not survive to begin the grieving process.

Bereaved parents stated that how they were treated by the staff created a lasting

impression on their grief experience. The staff’s attitudes and demonstration of caring,

compassion, and sensitivity during the time surrounding the death of their child were

identified as being crucial to positively affecting the grieving process of bereaved

10

parents. Attitudes and actions of healthcare professionals that were viewed as insensitive,

callous and routine were found to negatively affect the grieving process of bereaved

parents.

Rini and Loriz (2007) found that actively participating in the child’s care and

being present prior to and immediately after the death was a pivotal time for parents. It

provided them with a time to fulfill their role as parents and to say good-bye to their

infant/child before they died. These activities were later described by parents as being

very helpful in preparing them for imminent death. Parents who were not allowed or were

not given the opportunity to hold their infant/child before they died found this to be

detrimental to the grieving process as it resulted in the constant reflection of negative

memories. One mother described how she was devastated when her child died without

her being present as she was asked to leave the room during the failed resuscitation

process. Activities cited by parents as positively affecting their grieving included being

offered privacy in the form of a designated space in the NICU/PICU and performing

rituals that were considered important by the parents prior to their child’s death.

Bereaved parents who participated in the study by Rini and Loriz (2007) were White and

predominately women; therefore, the experiences of fathers and parents of other racial

ethnic groups remain unknown. The researchers also expressed concern that, for some

bereaved parents, the child’s death had occurred up to two years prior to the interview

taking place and reliance on the participant’s memory could result in inaccurate

recollection of events.

11

Religion and Spirituality

Religion

The literature has clearly differentiated spirituality from religion. While

spirituality is seen as a search for existential meaning, religion is viewed as being

organized systems of faith (Burkhardt & Nagi-Jacobson, 1989; McSherry & Cash, 2004;

Turner, 1996). Religion is also viewed as the outward practice of spiritual understanding,

an explicit expression of spirituality, and a specific framework of beliefs and values that

are used to guide a person’s life (Horsburgh, 1997; Subone & Baider, 2010). Koenig

(2009) defined religion as practices, beliefs, and rituals that are related to the Sacred. The

Sacred refers to the mystical, supernatural, or God. Religious beliefs were seen as a set

of rules that are used by individuals as a framework for guiding their lives within a social

group and providing a specific viewpoint about life after death. The core of religion, as

stated by Koeing, is established traditional beliefs that are held by a group of people who

have similar beliefs and practices related to the Sacred.

Schneiders (2003) describes religion as a spiritual tradition that emerged from

some introductory experience of divine or cosmic exposure to the mystic. For example,

Christians decree Jesus as the divine Son of God, and in Buddhism Buddha became

divine through his spiritual journey where he experienced enlightenment. Religion is

about the development of socially mediated human relationships with the sacred/the

divine/ God or Gods. Religion is described as an institution that embraces a particular

spiritual tradition, for example Lutheranism, Roman Catholicism, Soto Buddhism and

Reformed Judaism. The institutional pattern of belief that is considered important is

determined by cultural, societal and/or group norms and utilized by individuals/groups to

12

transcend their lives and lead to salvation either in this life or in the after-life. Exposure

to religious teachings results in individuals developing specific ways of understanding

themselves and having a relationship with other human beings and the world.

Horsburgh (1997) identified religion as a specific expression of spirituality that

includes a structure of formal belief used by individuals to guide their lives. Through

rituals, religious people often express their faith in a church, synagogue, mosque or other

form of organization. Therefore an individual may be spiritual without espousing a

religion and an individual may be very religious without having a well-developed sense

of spirituality. Peri (1995) stated that religious practices may encompass spirituality, but

spirituality need not include a religious practice. Religion and spirituality hold similarities

as they both can provide guidance on how individuals live harmoniously with self, others,

nature and the environment.

Spirituality

Spirituality is viewed by many researchers as the core of human beings that gives

meaning and purpose to each person’s existence irrespective of their faith (Surbone &

Baider, 2010). All human beings are considered to be spiritual. Broader than religion,

spirituality is defined as a search by individuals to connect with whatever aspects of their

experiences in life that are sacred to them versus only a belief in God or higher power

(Kramer, Ironson, & Kaplan, 2009). Others have viewed spirituality as a search for

meaning and purpose in life, caring for the human spirit, a connection with oneself,

others, nature, and God/life forces (Burkhard & Nagi-Jacobson, 1989; O’Brien, 2008;

Turner, 1996). Thomas and Retsas (1997) viewed spirituality as an inherent characteristic

of each person that is used as a source of strength and is developed as a result of the

13

individual’s faith in self, others and/or a higher power. They also agree that spirituality

provides meaning and purpose to individuals’ lives as they transcend their everyday

experience.

Unlike religion that is organized with sets of rules and regulations, Koenig (2009)

defined spirituality as a personalized belief that is defined by the individual and is free

from rules and regulations. Spirituality, for some people, is characterized as

individualistic and secular, that is, free from any religious connections. McSherry, Cash,

and Ross (2004) have suggested that individuals will utilize their values and world-views

to create their own interpretation and understanding of spirituality.

Horsburgh (1997) focused the definition of spirituality on tangible activities of

beliefs and practices that inspire and motivate a person’s life. These practices include

non-material beings such as Gods, spirits, a higher power, or humanistic activities that

transcend the daily lives of the individual and help the person move toward a

transformation of self. Martsolf and Mickley (1998) identified five attributes of

spirituality: 1) having meaning and purpose used by the individual to make sense of life,

2) having cherished beliefs and standards that are valued by the individual, 3) achieving a

state of transcendence that involves a dimension beyond the self, 4) connecting and

relating to others/God/higher power/the environment, and 5) using reflection to become

the person through empowerment.

Frankl (1997) equates human existence with spiritual existence which makes all

humans spiritual. Spirituality is described as being the core, the center of all humans that

takes precedence over the mind and body. The spiritual core of the individual integrates

14

the body and the mind to create this wholeness. The body and mind of a person cannot be

helped unless the spiritual domain is addressed.

Schneiders (2003) identifies spirituality as a characteristic of human beings who

have the capability to transcend or reach beyond themselves through knowledge and love

and develop a relationship with self, others and the world. Spirituality for the individual

can be religious or non-religious; however, by transcending the self and defining their

ultimate value, spirituality becomes the ultimate goal of self-actualization for all humans

irrespective of whether the experience is religious or not. Spirituality, is therefore,

expanded to include the activity of the human spirit not only its original reference to

God/Holy Spirit. Spirituality can incorporate religious beliefs and can also have different

meanings for different traditions/cultures. Christian spirituality involves a life of faith,

hope and love within the community of the church, and its ultimate value is related to the

trinity; Father, Son and Holy Ghost. Judaism, Hinduism and Islam also have a religious

affiliation and identify their holy being as their ultimate value. Other traditions/cultures,

for example, Buddhism and Native American spirituality, include a belief of self-

transcendence similar to their religious counterparts, but their ultimate value is non-

religious as they do not identify with a personal God. Other spiritual traditions such as

communing with nature are explicitly non-religious, recognizing no self-transcendence

and nothing beyond the universe.

In clarifying the definition of spirituality, Schneiders (2003) identified four

attributes: 1) Spirituality is personal and is developed from the lived experience of the

individual; 2) An individual’s spirituality is not developed by accident. It is not an

episodic event or the practicing of certain rituals; instead, it is a conscious rational

15

approach to life that is actively pursued and is ongoing by the individual; 3) Spirituality is

viewed as a project of integrated holistic living of body, mind, spirit, emotion, and

thoughts. It is actively pursued leading to the creation of ongoing growth and

development; and 4) Spirituality is viewed as being positive and is not associated with

self-destructive or violent behaviors. Rather, the result of pursuing and integrating

spirituality into a person’s life results in self-transcendence. The individual identifies and

pursues a purpose of ultimate value and can include personal/social well-being, the good

of the earth, justice for all people, or a relationship with God/Sacred.

Mosely (1997) characterized the spirit as being broken for all individuals who are

faced with traumatic events resulting in the manifestation of grief, fear, and anxiety.

These stressful events often throw individuals into crisis as they wrestle with the

question, “Why me?”. Those individuals who believe in God and experience negative

thoughts about their faith may question their faith, feel deserted by God, or become angry

with God which may increase their feelings of hopelessness, depression, and isolation.

Use of Spirituality/Religion as a coping strategy

Stressful life events occur at some point in an individual’s life and the suffering

that results from the event has the ability to profoundly affect, negatively or positively,

the life of each person. Friedemann, Mouch, and Racey (2002) believe that stress creates

disequilibrium within the individual and that all humans have the ability to buffer the

distress and restore equilibrium to their lives by utilizing spiritual coping strategies. The

use of spirituality in times of crisis can help the individual counteract the difficulties and

pain caused by the situation, to transcend their immediate world to cope with the crisis,

16

and to examine their circumstances within a broader universal context (Frankl, 1997;

Friedemann et al., 2002; Levine, Yoo, Aviv, Ewing, & Au, 2007).

Stressful or traumatic life events often evoke feelings of anger, hopelessness, and

despair in individuals. Spirituality is one of the coping strategies that an individual can

use when dealing with personal crisis, stressful/traumatic life events or loss of a loved

one. Spirituality can be a source of support to alleviate stress, to provide individuals with

inner strength to heal the spirit, to make sense of their experiences of suffering, and to

move forward with their lives (Glass, 2007; Mosely, 1997; Rozario, 1997).

Stressful or traumatic events cannot be changed, but finding meaning as to why

they occur can help the individual confront the situation, and through self-transcendence,

connect to a higher power/God/Universe and rise above the stressful event (Rozario,

1997). Spirituality also provides the individual with the ability to find meaning and

purpose in the most difficult of circumstances. Transcending one’s situation beyond

despair to focus instead on finding meaning even in the face of tragedy is recognized as a

vital coping strategy (Frankl, 1997; Lyon &Younger, 2001).

The spiritual lives of bereaved parents (Klass, 1999) describe how these parents

use spirituality and/or religion to find solace. The meaning that manifests from believing

in God as a Higher Power often is used to provide a sense of security and bring peace.

Some mothers in the Christian faith have reported an affiliation with Mary, Jesus’

mother, whose son also died at a young age. The belief in God being the Father who

directs and plans their lives can often provide solace to bereaved parents who believe in

divine intervention, as they equate the death of their child with God’s plan.

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Parents who believe in a heaven find comfort in believing that their deceased

child is in a better place and that when they die, they will be reunited with their child

(Amentrout, 2007; Klass, 1999). Bereaved parents can also find healing or bring meaning

to their lives through spirituality not connected to religion, including meditation,

inspirational writings, poetry, nature walks, listening to or creating music, painting or

sculpting, and therapeutic touch (Klass, 1999; Laakso & Paunonen-Ilmonen, 2001;

Meert, Thurston, & Briller, 2005).

In summary, bereaved parents experience severe emotional and physical

symptoms following the death of their child. The literature has identified characteristics

of spirituality to include providing meaning and purpose in life, transcending the

suffering of individuals who are faced with stressful or traumatic life events, evoking

hope and healing, and obtaining peace. Bereaved parents have identified spirituality as

being very important in coping with their grief but little is known about spiritual coping

strategies used by parents after their infant’s/child’s death in the NICU or PICU. Even

less is known about different uses of these coping strategies for different racial/ethnic

groups. There are no studies that have explored spirituality as a coping strategy used by

bereaved parents over time in their grieving process.

Research Questions

This study was designed to address the following research questions.

1. Are there differences in the use of spiritual coping strategies across racial/ethnic groups, religious groups, mother/father dyads and time at one and three months post-death?

2. What is the relationship between spiritual coping strategies and grief, personal growth, and mental health for mothers and fathers at one and three months post-death?

18

3. Do these relationships hold when race/ethnicity and religion are controlled?

A longitudinal design allows for the spiritual coping strategies of the same sample of

participants to be examined at one month and three months after the death of their child.

Analysis of the data will determine what changes, both negative and positive, have

occurred in the same individuals over time. The selection of one month as the first data

collection time point will allow for the parents’ initial crisis reaction to the death of their

child to have subsided but the use of spiritual coping strategies would be recalled

accurately. Three months will allow for comparisons as to the frequency that spiritual

coping strategies are being used.

Conceptual Framework

Hogan’s grief theory (1996) defines grief as “a process of coping, learning and

adapting” (p. 44) and was developed from qualitative grounded theory research. The

model posits that irrespective of the relationship of the bereaved person to the deceased,

the process of bereavement remains unchanged. The model consists of six phases. The

first phase “Getting the news” is when the person is informed of a terminal diagnosis, or

“finding out” is when the death of their loved one has occurred. The bereaved person

responds to the news often in shock, especially if the death was sudden. “Facing reality”

is the second phase where the bereaved person experiences intense feelings of grief. The

third phase is “becoming engulfed in the suffering” where the bereaved person longs and

yearns for their deceased. Feelings of sadness, loneliness, guilt, and reliving the past are

often experienced at this phase. As the bereaved person gradually “emerges from the

suffering” in the fourth phase, they begin to experience good days and by the fifth phase,

“getting on with their lives,” hope and happiness gradually begin to return. In the final

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phase “experiencing personal growth,” the bereaved person develops a new perspective

on life; they often reorganize and prioritize their lives, making life more purposeful and

meaningful. The model hypothesizes that these stages are not linear but cyclical (Hogan,

Morse & Tason, 1996).

In the proposed study, bereaved parents are expected to respond to the news of

their infant’s/child’s death with intense emotional and physical symptoms of grief

especially if the death was unexpected. As they begin to face the reality of their

infant’s/child’s death, their grief is further intensified as they cannot imagine a life

without their infant/child. Feelings of despair, loneliness and depression often occur

(Armentrout, 2009; Laakso & Paunonen-Ilmonen, 2001). As bereaved parents become

engulfed in their suffering, they spend a considerable amount of time talking about the

deceased infant/child and keeping the deceased infant’s/child’s room unchanged (Bellali

& Papadatou, 2006). At some point, most bereaved parents emerge from their grief and

begin to gradually move forward with their lives. The model suggests that they use their

cultural, religious and/or spiritual beliefs to remain connected with their deceased child

and to find meaning in their infant’s/child’s death. In adjusting to their loss and moving

forward with their lives bereaved parents become emotionally stronger (Bellali &

Papadatou, 2006; Buchi, et al., 2007). Their values and priorities are redefined, often

finding material things less significant and developing a greater appreciation for family

relationships (Armentrout, 2007; Barrera, et al., 2009; Bellali & Papadatou, 2006). In the

final phase, many bereaved parents experience personal growth by beginning to find

meaning and purpose in their lives. They experience changes in themselves, their family

lives and their social lives (Bellali & Papadatou, 2006; Meert, Thurston & Thomas, 2001,

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Seugin et al., 1995). They may become involved in activities within their community that

transform their lives and honor the memory of the deceased infant/child and/or join

organizations whose goals are to help others (Armentrout, 2007). The proposed study

focuses on the grieving experiences of bereaved parents as outlined by the grief phases

depicted in the model. Greater parent use of spiritual coping strategies is expected to be

related to less severe parent grief (despair, detachment and disorganization) and better

parent mental health (depression, post-traumatic stress) and personal growth. The

expected effects of spiritual coping strategies are consistent with crisis (Glass, 2007;

Mosely, 1997; Rozario, 1997) and bereavement frameworks (Hogan & Schmidt, 2002).

Figure 1: Bereavement framework

Parent Characteristics -Race/Ethnicity -Gender -Importance of religion and/or spirituality

Spiritual Coping Strategies

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CHAPTER II

REVIEW OF THE LITERATURE

In the United States (U.S.) 51,000 infants and children under the age of 18 die

annually with 52% representing infant deaths and 48% representing children and

adolescents deaths (Matthews et al., 2008). These figures are indicative of approximately

102,000 U.S. parents losing their child each year. Cause of death for infants, children and

adolescents include congenital anomalies, complications of prematurity, sudden infant

death syndrome (SIDS), trauma, homicide, suicide, Human Deficiency Virus/Acquired

Immune Deficiency Syndrome (HIV/AIDS) and cancer (Matthews et al., 2008).

The loss of a child is an event that severely taxes the parent’s and family’s ability

to cope. Parental grief has been described as a traumatic event that generates negative

feelings, consumes energy, disrupts the parent’s emotional and social world, and causes

severe and even prolonged distress (Klass, 1997; Laakso & Paunonen-Iimonen, 2001;

Meert, Thurston, & Thomas, 2001). Anger, blame and guilt may also be a manifestation

of the grieving process for bereaved parents. Depending on the circumstances

surrounding the infant’s or child’s death, blame can be self-directed. Parents feel that

their role is to protect their children from harm and parents who perceive that they could

have done more to prevent the death experience self blame and guilt (Laakso &

Paunonen-Ilmonen, 2001). In response to their grief, bereaved parents may rely on their

religious or spiritual beliefs to obtain comfort, create meaning from the loss, and help in

the healing process that will ultimately result in a resolution of their grief (Robinson et

al., 2006; Lichtenthal, et al., 2010).

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This chapter reviews the literature on grief symptoms in bereaved parents, the effect of

bereavement on parent mental health and personal growth, the use of spirituality/

religiosity as coping strategy for parents facing death of an infant/child in the

NICU/PICU and differences in the use of spiritual coping strategies across racial/ethnic

groups and mothers and fathers.

Grief in Bereaved Parents

Armentrout (2009) interviewed 15 bereaved parents whose infants had died in the

NICU to determine how bereaved parents coped with their grief following their decision

to withdraw life support. Ages of participating parents ranged 27-42 years (M = 31.6

years). Most of the bereaved parents were White (98%), with education levels ranging

from one year of college to master’s degree; annual household incomes ranged from

$50,000 to $100, 000, and 99% identified themselves as Christians. The gestational ages

of the deceased infants at birth ranged from 25-41 weeks. Bereaved parents were

recruited from a support group for parents who had experienced a neonatal death. Time

since the death ranged from 0.5 to 12 years (M = 3.9 years). Eight bereaved parents had

surviving children and 6 bereaved mothers had another child after their loss.

Most of the bereaved parents described feeling shocked, lost, emotionally

devastated and nonfunctional during the first year following the death of their infant.

Performing routine tasks of daily living, for example getting out of bed, taking a shower

and getting dressed, or just going out of the house required tremendous amounts of

energy. One mother felt that she was not emotionally present for her surviving child for

about a year after the death. Another mother stated that each day she would sit on the sofa

and just stare all day. Most of the mothers describe having difficulty in staying focused.

23

Bereaved fathers described keeping busy as ways of helping to cope with the pain

associated with the loss; this included returning to work, doing household tasks or

projects and getting on with their lives (Armentrout, 2009).

Bereaved parents described moving forward with their lives as a long and difficult

process. They had felt powerless during their infant’s illness and death but as the pain

associated with the loss subsided they were forever changed. They became more

appreciative of life, felt stronger and a better person as a result of their terrible ordeal. As

they emerged from this period of intense grief their priorities shifted and their perspective

on life changed; they became more compassionate, less judgmental of others and

connecting more with family and friends (Armentrout, 2009).

Bereaved parents also reported (Armentrout, 2009) that not only were their lives

changed but a void was created following the death which they filled by incorporating the

presence of the deceased child into their everyday lives. This included having the

deceased infant’s framed footprints and pictures displayed with other family members’

pictures. One father found that talking to his deceased infant each time he visited the

cemetery helped in coping with his grief. Bereaved parents with surviving children

described the importance of keeping the memories of the deceased child alive. They

achieved this by including the brother/sister in the creation of a baby book that included

the personal belongings of the deceased child and also having family discussions about

the sibling that died. All bereaved parents reported that as time passed the pain associated

with their grief lessened but never goes away.

Armentrout (2009) described the negative feelings about religion that bereaved

parents experienced following the death of their infant. Anger at God was a predominant

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emotion. Some bereaved parents questioned God by asking why He allowed this to

happen to them while they maintained their faith, attended church and discussed their

anger with their priest. Others abandoned their faith in a perfect omniscient and

omnipotent God, instead choosing to believe in a higher power that can make mistakes.

Buchi et al. (2007) examined the grief reactions and post-traumatic growth in

bereaved parents 2-6 years after the death of their extremely premature infant in the

NICU. Fifty four bereaved parents participated in the study of which 22 were couples, 5

were non-partnered bereaved mothers and 5 were non-partnered bereaved fathers. Ages

of the participating mothers averaged 34.7 years (SD = 5.1) and of fathers 38.9 years (SD

= 8.6). The majority of bereaved parents (48%) had 10-12 years of education and at least

one surviving child (80%). Time since the death of the baby averaged 3.6 years (SD =

1.2). Of the 40 premature babies who died, 12 were twins and 3 were triplets, mean

gestational age and birth weight was 25 weeks (SD 0.9) and 693 grams (SD = 1.32)

respectively.

Buchi et al. (2007) found that most of the bereaved parents (80%) showed signs

of grief, including feelings of sadness, anxiety of the loss, anger and searching for

meaning 2-6 years after the infant had died. Bereaved parents also identified their

deceased infant as occupying a central place in their lives with 12 (19%) indicating

substantial suffering and 38 (70%) still missed their baby 2 to 6 years after the loss.

Bereaved parents who did not have other children had higher grief scores. Some bereaved

parents (7%) had scores that were indicative of depressive disorder; 15 (28%) bereaved

parents (8 mothers, 7 fathers) had scores indicative of possible anxiety disorder, and 4

(7%) mothers and one (2%) father had scores indicative of probable anxiety disorder. The

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Munich Grief Scale was used to measure perinatal grief, the Post-Traumatic Growth

Inventory (German version) to measure post-traumatic growth and Pictorial

Representation of Illness and Self-Measure (PRISM) to measure suffering in the study

participants.

Buchi et al. (2007) found differences in grief symptoms by gender. Bereaved

mothers had higher grief scores than bereaved fathers, specifically they were sadder and

needed to talk about the loss more than bereaved fathers but they experienced higher

post-traumatic growth (78%) than fathers (44%) following the loss of an infant. Post-

traumatic growth for bereaved mothers included becoming more compassionate, feeling

stronger, better able to handle difficulties, able to count on others in times of trouble and

having new priorities on what is important in life.

An important limitation of the study was its small sample. Differences were not

found in anxiety and depression among bereaved mothers and fathers related to the small

sample. Other studies have found that grief symptoms were intensified shortly after the

infant’s/child’s death and subsided as time since the death increased. The researchers

found that the majority of bereaved parents had continued grief symptoms including

continued suffering, and probable anxiety and depression 2 to 6 years after the loss but

specific time since the death and demographics of bereaved parents, including number

with surviving children were not stated. Another limitation is the study’s cross-sectional

design.

Bellali and Papadatou (2006) explored the grieving process with 22 bereaved

parents (13 mothers, 9 fathers) whose ages ranged from 31- 51 years. The deceased

children’s ages ranged from 2 – 14 years, and all had died from head injuries in the

26

PICU. Time between the death and participation in the study ranged from 8 months to 7

years.

Three core categories were identified by bereaved parents as being essential to

their grief: 1) feelings of emptiness, 2) deep suffering and 3) finding meaning. They

attributed their feelings of emptiness to the physical and psychological absence of the

child. This deep feeling of emptiness and sorrow was stated to be indescribable and

occurred each time that they went to events, places or situations that reminded them of

the deceased child. Some bereaved parents, in an attempt to fill the empty void left by

their deceased child, became pregnant shortly after their child died. Four bereaved

mothers had another child 10 to 24 months after their loss and found that this distracted

them from their suffering (Bellali & Papadatou, 2006).

All bereaved parents reported their grief (Bellali & Papadatou, 2006) to include a

void in their lives and the physical pain created by the death resulted in deep suffering

that was incomparable to any other loss experienced in their lives. The pain was

described as deep and long lasting but was minimized by attributing meaning to the

deceased child’s life and death. To help with the pain associated with the void in their

lives caused by the physical absence of the deceased child, bereaved parents described

remaining connected to their deceased child by feeling their child’s presence or their

spirit especially during the first months following the death. Connection was also

maintained by regular visits to the cemetery, and keeping the child’s room and

belongings intact.

Deep suffering resulting from their loss was described by bereaved parents

(Bellali & Papadatou, 2006). The majority of bereaved parents lost their child to sudden

27

and traumatic death and the events; experiences and interactions at the time of their

child’s death profoundly affected them. Parents described the event as surreal as their

world fell apart because of their difficulty in accepting the death. Strategies used to cope

with their suffering included social support and activities where they could talk about

their deceased child. Going back to work or resuming a hobby helped some bereaved

parents cope with their pain and suffering. Religious beliefs also eased their suffering as

they were comforted with images of their child in heaven being close to God, or being in

paradise, and if they led a good life they would be reunited with their child when they

die. They also believed that their deceased child was being protected by other deceased

relatives who were watching over them. A few parents who were unable to find coping

strategies to ease their pain and suffering stated that life held no purpose for them, they

had given up on life and were contemplating or having thoughts of suicide.

Bereaved parents (Bellali & Papadatou, 2006) described that finding new

meaning to the child’s life was helpful in coping with their suffering. This involved

bereaved parents trying to find answers to questions surrounding their child’s death and

making meaning from their suffering. Those bereaved parents who were engaged in

positive meaningful activities found them to be helpful in minimizing their suffering.

Others with feelings of anger, injustice, guilt and bitterness had more pronounced

difficulties in dealing with their grief.

The length of time since the death affected bereaved parents’ grieving process.

The bereaved parents whose child’s death occurred 4- 6 years before participating in the

study described experiencing personal growth in themselves and in their relationships

with others. Most (n = 13, 59%) emerged from their suffering by accepting the changes in

28

their lives and finding purpose and meaning in their lives despite their pain and suffering.

Parents reported a change in their perceptions of themselves, others and life. Their values

and priorities changed, attributing less significance to material things and work, and

instead focusing on developing a loving relationship with family members. Positive

changes for many bereaved parents included viewing life differently as they became more

compassionate and understanding (Bellali & Papadatou, 2006).

Bereaved parents who had other children described themselves as being more

patient and flexible in their role as parents. They also became closer to their surviving

children and demonstrated more affection and love towards them. The death of a child

also resulted in changes in their marital relationships. Bereaved parents reported the loss

as either bringing their relationship closer or increasing the distance between them.

Couples whose relationship was deteriorating had pre-existing marital difficulties prior to

their child’s death (Bellali & Papadatou, 2006).

Negative attribution of grief by bereaved parents included anger at self, God and

others. Bereaved parents expressed feelings of guilt for not protecting their child from

harm, bitterness as they felt responsible for not providing a good life for the child and a

deep sense of injustice that the deceased child was robbed of longevity. Additionally,

some bereaved parents felt God was punishing them for their sins, or the envy of others

towards their family or the casting of spells with the evil eye resulted in their child’s

death. These negative feelings of grief affected 9 (41%) of the bereaved parents who saw

their lives as worthless and meaningless 3-7 years after their child had died. They also

had difficulty moving on with their lives and continued to experience feelings of anger,

rage or guilt, depressive symptoms and a desire to die (Bellali & Papadatou, 2006).

29

Barrera et al. (2007) conducted a mixed method study that examined the patterns

of coping with grief in 20 bereaved parents (13 mothers, 7 fathers) 4-19 months after the

death of their infant/child. Ages of participating mothers ranged from 29 to 56 years (M

=39.4, SD = 6.48) and fathers’ age ranged from 31 to 48 years (M =39.2, SD = 6.48).

Most bereaved parents (65%) had completed high school and were from a middle-class

socio-economic background. Ninety percent of the participants were White with the

remainder (10%) Asian-Canadian and African-Canadian. At the time of death the

deceased infant’s/child’s ages ranged from 9 days to 17 years (M = 8.3, SD = 7.29). Most

of the deaths (n = 9) were related to cancer, three from congenital heart disease and three

from other causes and almost all of the children died in the hospital.

Bereaved parents were found to use three patterns of coping with their grief:

Integration of grief, Consumed by grief and Minimal expression of grief. The Beck

Depression Inventory (BDI) and the modified version of the Grief Measurement scale

(MGMS) were used to measure depressive and grief symptoms in the study participants.

The majority of parents (65%) (7 mothers, 6 fathers) used Integrated Grief to cope with

their loss. Bereaved parents in this category were able to balance coping with the pain

associated with losing a child and continuing to function in their daily lives. The

characteristics of these bereaved parents included finding inner strength that helped them

to move forward with their lives and redirected their grief experience to finding new

purpose in their lives. Bereaved parents in this category all had surviving children which

they described as giving them hope and purpose in life. One mother stated that the reason

she got out of bed each day was because of her surviving child (Barrera et al., 2007).

30

Additional factors that helped these parents cope with their grief included

receiving support from family and friends, keeping busy and engaging in physical

activities. Within this category length of the child’s illness before death was (M = 23.4

months, SD = 35.42), age of the deceased children at the time of death was (M = 7.5

years, SD = 7.5) and the parents had been bereaved for 5 to 19 months. All the bereaved

parents in the Integrated Grief category reported fewer symptoms of depression and

lower levels of grief which was reported as more than one standard deviation below

clinical range (Barrera et al., 2007).

Only five bereaved mothers were overwhelmed and Consumed by Grief which

affected their activities of daily living. Irrespective of the time since the death these

bereaved mothers had difficulty accepting their infant’s/child’s death and described

feeling empty, unfulfilled, crying all the time and being unable to see a future for

themselves without their deceased child. One mother stated that events/activities that

were insignificant before the death were now stressful. Other mothers described their

symptoms of overwhelming grief to include incessantly reliving the last few moments of

their infant’s/child’s life, crying constantly at work, having difficulty conversing with

others, feelings of guilt, lack of control, and abusing alcohol (Barrera et al., 2007).

All the mothers describe their relationship with the deceased child as being

extremely close. Two mothers who had lost their only child described the death as

representing a loss of their parenting role and difficulty in seeing/being around other

children. Bereaved mothers with surviving children expressed difficulty in parenting their

surviving children. Within this Consumed by Grief category length of the illness before

death ranged from 5.4 to 73 months; ages of the deceased infants/children at death ranged

31

from .54 to 10.6 years, and the parents had been bereaved from 4.5 to 11 months. These

bereaved mothers had clinical levels of depression and high grief (Barrera et al., 2007).

The two Bereaved parents (one mother and one father from separate families)

who showed Minimal Expression of their Grief had difficulty in expressing their

emotions associated with the loss. They described their daily activities as being

unchanged and maintained a very busy schedule that incorporated multiple activities

throughout each day. The father described his child’s death as unimportant as he had

more urgent issues needing his attention and the mother kept busy with managing

household activities. These two parents reported the lowest depression and grief of all the

bereaved parents. The deceased children were adolescents (M = 17.5 years, SD = .12)

and had died unexpectedly of meningitis and drowning. The mother had been bereaved

for 4 months and the father, 10 months.

Laakso and Paunonen-Ilmonen, (2001) interviewed 52 bereaved mothers one to

three years after their child’s death about their grief experience and how they coped with

their grief. All of the mothers were White, 20-49 years old, with the majority being

married or partnered. The deceased children were under 7 years old (75% less than one

year) and the majority of deaths (75%) resulted from life-threatening illnesses. These

mothers described feeling hopeful and having moments of despair when they were told

about their child’s illness and prognosis. In the early phase of their grief, bereaved

mothers expressed anger, guilt and a belief that they had failed their deceased child. They

also reported experiencing physical symptoms of pain, malaise and fatigue with

psychological symptoms of depression and feelings of emptiness. Some of the bereaved

32

mothers became fearful of being alone especially after the funeral when contact with

friends diminished and their spouse/partner returned to work.

Some bereaved mothers viewed the child’s death as a positive experience as they

experienced joy, happiness and relief knowing that their child’s pain and suffering was

over. The child’s death led to feelings of rejuvenation and gaining strength as they had

spent a long time in the hospital caring for their sick child. Bereaved mothers used a

variety of mental and physical activities to cope with their grief and bring meaning to

their lives. These included returning to work, changing careers or resuming hobbies of

reading, writing, painting, and listening to music. Bereaved mothers who chose to delay

returning to work often relied on alcohol and drugs to cope with their grief especially if

the loss was their only child. These negative behaviors were discarded as the negative

feelings associated with their grief diminished (Laakso & Paunonen-Ilmonen, 2001).

Bereaved mothers (Laakso & Paunonen-Ilmonen, 2001) described positive and

negative changes to their values and meaning about their lives. Positive changes included

increased personal growth, growing up, having a new appreciation for life, establishing a

deeper relationship with their own parents and not being afraid of dying. Negative effect

of grief included losing their enthusiasm and creativity for living and intensification of

fear and bitterness.

Limitation of the study was that bereaved parents were interviewed 1-3 years after

the death but differentiation was not made between responses to grief and length of time

since the death. Age of the deceased child and the effect, if any, on bereaved mother’s

grief symptoms was not reported.

33

Aho, Tarkka, Kurki, and Kaunonen (2006) described the grief reaction of 8

bereaved fathers recruited from a closed internet contact group between 2 months to 2

years after the death of their child. Average age of the fathers was 35, and all were

married or partnered. The deceased children’s ages ranged from 40 minutes to 2 years,

80% were under 4 months old and 60% died from complications of congenital heart

disease. Place of child’s death was not reported.

Aho et al. (2006) found that bereaved fathers experienced feelings of agony,

migraine, and arrhythmias shortly after the death of their child. Emotionally, they were

angry and blamed themselves for their child’s illness and death because of their imperfect

genes. Expressions of their agony included weeping, kicking objects, sleep disturbance

and difficulty in concentration especially when they returned to work. Socially they chose

to isolate themselves from family and friends. Bereaved fathers who directed blame at

themselves and described their lives as empty also experienced depressive symptoms and

inability to continue working. Unlike bereaved mothers in the Laakso and Paunonen-

Ilmonen, (2001) study these bereaved fathers coped with their grief by repressing or

concealing their feelings from other people. To cope with their grief they became

immersed in some form of activities, for example returning to work, resuming hobbies

and excessive drinking of alcohol. Bereaved fathers cited acceptance of their child’s

death as helping them in overcoming their grief especially since they could do nothing to

change the situation. Within 3-4 weeks they began to move forward with their lives,

feeling less anxious but still experiencing times of sorrow.

The death of a child changed these bereaved fathers’ lives both positively and

negatively. Positive growth included feeling more mature and emotionally stronger. Their

34

values and priorities changed, becoming less materialistic, placing more emphasis on

good health and maintaining a good relationship with their spouse/partner and surviving

children. The reality of death made these bereaved fathers acknowledge the fragility of

life; they became emotionally stronger, expressed a greater appreciation for life and

preferred to live one day at a time. Relationships with their friends also changed; some

severed ties with friends, preferring to socialize with other bereaved families. Negative

experiences described by bereaved fathers included social isolation from family and

friends, unemployment, financial difficulties, depression and mental illness (Aho et al.,

2006).

Woodgate (2006) described the changes in the lives of 28 bereaved parents (17

mothers, 11 fathers) resulting from their child’s death in the hospital. Most bereaved

parents were White (93%), married or partnered (89%). All were 35-67 years old and had

at least one surviving child. The deceased children’s ages ranged from 3 days to 28 years,

the majority of deaths (98%) were related to life-threatening illnesses and time since

death and participation in the study was from 7 months to 18 years after the death.

Transitioning through their child’s death included extreme sadness as they tried to

move forward with their lives. Bereaved parents emphasized their conscious decision in

not seeking closure as that would be synonymous with ending their relationship with the

deceased child. Instead they strived to remain connected to the deceased child by keeping

their memories alive with objects, articles or pictures of the deceased child that held

special meaning for them. Bereaved parents also kept their deceased child’s memory

alive by remembering them on their birthday, and 25% created websites depicting their

child’s life (Woodgate, 2006).

35

Bereaved parents emphasized that being a good parent was important in the

parent-child relationship and in keeping the memory of their deceased child alive.

Attributes of being a good parent included doing everything possible for their child

during their illness, ensuring that the child was in minimal pain and not suffering,

providing emotional support throughout their child’s illness, being able to advocate for

their ill child during the hospitalization and being present at the time of death (Woodgate,

2006).

Additionally, bereaved parents described how important it was to have good

memories during their child’s illness and at the time of death. The type of care the child

received during hospitalization affected quality of the memories for bereaved parents.

Family and friends of the bereaved parents and health care providers who cared for the

deceased child in a loving and compassionate manner helped the parents to recall good

memories after their child’s death (Woodgate, 2006).

Most parents expressed dissatisfaction with the care that their child received in the

final stage of life. They described how their role as parents was eliminated as they felt

underappreciated or ignored by heath care providers at a time when their child needed

them most. This resulted in them questioning their ability to be good parents. Bereaved

parents who were involved in the decision making surrounding the treatment needs of

their child and who felt that their choices to continue in their role of parenting their ill

child was respected by health care providers felt confident that they were good parents

(Woodgate, 2006).

Barrera et al. (2009) conducted a longitudinal qualitative study that explored

parents adjustment to the death of their child from cancer. Eighteen bereaved mothers and

36

13 bereaved fathers, including seven couples, participated in the study at 6, 12 and 18

months post-death. Most of the bereaved parents were White (74%) and married (90%)

with a college education (84%). Other races/ethnicities represented in the study included

Middle Eastern (20%) and Asian (6%). Age of the child at the time of death ranged from

8 months to 20 years old, 98% of the bereaved mothers were the primary caregiver

throughout the child’s illness, and length of their illness ranged from four days to 14.7

years. All of the deceased children were treated in the Hematology/Oncology unit but

place of death was not reported.

Most of the bereaved parents (55%) described their lives as empty and lonely and

they yearned to hold, touch and kiss their deceased child. Many parents (48%) expressed

overwhelming sadness and physical pain since the loss; 5 mothers and 6 fathers

expressed anger of the unfairness of the loss and having to cope with such overwhelming

grief. Over half of bereaved parents described their child’s illness as long and arduous

and expressed relief that their child had died because their suffering was now over

(Barrera et al., 2009).

The majority of bereaved parents (90%) describe maintaining a spiritual bond

with their deceased child. The memories of their deceased child, knowing that their child

was in a better place, visiting the graveside, lighting candles around the house, kissing the

deceased child’s photograph every morning and talking with the deceased child daily

were ways bereaved parents maintained a connection with their deceased child (Barrera

et al., 2009).

Explorations of bereaved parents’ current health, changes in their work schedules,

daily routines and relationships with family and friends were conducted through open-

37

ended interviews at six months after the death of their child. Four ways of how bereaved

parents adjusted following the death of their child emerged. These included maintenance

of a relationship with their partner, with surviving children, and with self, and

reengaging/reinvesting in their social network. Most of the bereaved parents described

the relationship with their partner/spouse as supportive. They felt that the time spent

caring for their ill child and then coping with extreme feelings of grief strengthened their

relationship. Bereaved parents also stated that they became closer in their relationship in

the six months following the death of their child as they now had more time to spend

together (Barrera et al., 2009).

Barrera et al. (2009) found that approximately one-third of bereaved parents felt

that the death of their child had a deleterious effect on partner/spousal relationship,

especially if the mother had been the sole caretaker of the terminally ill child and most of

the family activities were centered on the sick child. Lack of time spent with their partner

during the child’s illness resulted in disconnection from their partner or spouse. Bereaved

parents also described their partners as being distant, grieving excessively or too little,

and making little attempt to understand how the other person was feeling. Bereaved

parents who described their partner/marital relationship as unstable also expressed a

deterioration in communication which resulted in feelings of loneliness, frustration, and

even disdain toward each other. The development of partner discord increased the

likelihood of separation or divorce.

Barrera et al. (2009) identified the effect of bereaved parents’ grief responses on

their relationships with their surviving children. The majority of bereaved parents found

their surviving children to be a source of strength and support. They identified their

38

surviving children as their reason for living. Spending more time with them and

demonstrating more love and care were often stated as being very important to these

parents. They expressed feelings of guilt about ignoring their other children while caring

for the sick child and how they were now grateful to be able to make up the lost time.

Spending time with the surviving sibling was also stated by parents as an important part

of their grieving as it provided an opportunity for them to speak about the illness and

death of the brother/sister as a family. Most bereaved parents who did not have other

children also felt positive about subsequent pregnancies as it would provide them with

someone to love and care for again.

Barrera et al. (2009) found that a small percentage of bereaved parents felt

disconnected from their surviving child(ren). They expressed how difficult it was to

maintain a relationship with their living child(ren) throughout the extensive treatment

regime that was required by the sick child, especially if they were the sole caretaker.

Following the death of the child, these parents further described how life in the family

home and their relationship with the surviving child(ren) worsened because of the stress

that accompanied the loss. The existence of detachment or hostility also occurred

between some parents and their surviving child(ren). This developed because of extended

periods of separation that occurred between the parent, who was the primary care

provider to the sick child, and the surviving child(ren). Following the death, parents

described their relationship with their surviving child(ren) as superficial and found it

difficult to relate to them. These feelings were expressed irrespective of gender and age

of the surviving child or parent.

39

Additionally, bereaved parents expressed that the death of their child resulted in

redefinition of their self-identity. Through exploration of their feelings and gaining

insight about their child’s illness the majority of bereaved parents were able to re-

examine and redefine their identities which helped them adjust psychologically to the

death of their child. At six months following the death, most of these bereaved parents

were able to move forward with their lives. Bereaved parents described how caring for a

child with terminal illness was time consuming and after the death they could pursue their

own personal interests and find new goals and purpose in life. All fathers and 61% of

mothers by six months had returned to work and begun participating in family activities.

Approximately 40% of parents irrespective of gender were still struggling to adapt to the

loss of their child. Moving on was seen for them as rejecting their deceased child and

ending their function as a parent. Parents who expressed these feelings also had difficulty

dealing emotionally with their surviving children and partner/spouse (Barrera et al.,

2009).

Barrera et al. (2009) also described the changes that occurred within the social

world of bereaved parents following the death of their child from cancer. Most of the

bereaved parents described extended families and close friends as being very supportive

which helped them to cope with their loss. Being able to connect with people who would

make them feel comfortable and listen openly when the parents spoke freely about their

thoughts and emotions related to their deceased child provided additional support that

helped them adjust emotionally. Some bereaved parents felt isolated from their social

support, as they described receiving minimal or no help from friends and family members

when their child was ill or dying. They did not ask for help as they felt that they would be

40

a burden to others. After their child’s death they felt betrayed and resentful of friends and

family members and refused to accept help from them.

Barrera et al. (2009) found that making meaning of the experience was important

for many parents to cope with their loss. Bereaved parents sought meaning from religious

beliefs as to why their child had died. They felt that fate or forces beyond their control,

for example God, determined whether their child lived or died. Parents also described

how their child’s death was meaningful as they made changes in themselves and their

perspective of the world. They became less appreciative of frivolous and materialistic

things and placed greater importance on connecting to others by spending quality time

with family and with others.

Limitation of the study is that all the children had died from cancer and their

parents spent a significant amount of time caring for them during their illness. Results

may differ for bereaved parents whose loss was caused by a sudden event.

The cause of a child’s death, by sudden or expected illness, may affect bereaved

parents’ grief reactions and family relationships. Seguin, Lesage, and Kiely (1995)

compared bereaved parents grief responses 6 and 9 months following the death of their

son after suicide or motor vehicle crash. Participants included 18 bereaved mothers and

12 bereaved fathers in the suicide group and 17 bereaved mothers and 13 bereaved

fathers in the motor vehicle crash group. The average age for the deceased child in the

suicide group was 22 years old and 23 years old in the crash group. Fifty percent of

bereaved parents in both groups were married for over 28 years and all the parents had

surviving children. Most of the bereaved parents (59%) were employed and 50% had

completed high school. Race and ethnicity was not reported.

41

Seguin et al. (1995) identified differences between the bereaved parent’s mental

distress and grief reaction. Parents of children who had committed suicide exhibited

greater symptoms of depression at 6 and 9 months than parents whose children had died

in a motor vehicle crash. However, bereaved parents whose children had died following a

motor vehicle crash showed lower grief reaction at six months but higher grief reactions

at nine months than parents whose children had committed suicide.

On examination of family adjustment, about 50% of bereaved parents whose child

had died from suicide experienced more feelings of disengagement and distancing among

their family members. Bereaved parents in both the suicide and accident groups saw their

grief experience as having a positive impact on the family. They felt that this traumatic

experience brought the family closer together. Bereaved parents in the suicide group who

viewed this grief experience as positively affecting the family had deceased children who

were diagnosed with a mental illness or had a history of drug abuse which created stress

and tension in these families. The deaths brought calm into the lives of the families, as

they did not have to worry about their own safety (Seguin et al., 1995).

Seguin et al. (1995) examined bereaved parents’ ability to function in their social,

family and professional life, and their personal habits. Comparison of the two groups of

bereaved parents identified differences in life events. Bereaved parents whose child had

committed suicide were twice as likely to go out less and socialize less with family

members. Individuals who provided support to these bereaved families also differed

between groups. The suicide group of bereaved parents received support from co-

workers, friends or their extended family while the majority of support for parents in the

crash group was provided by immediate or extended family members. In the professional

42

sphere, bereaved parents in the suicide group were twice as likely to change their jobs or

take a leave of absence. Within their personal health habits, bereaved parents in the

suicide group experienced more changes in sleeping and eating patterns, had more

complaints of physical illness, and sought help from health professionals more than

bereaved parents in the crash group (Seguin et al., 1995).

Further comparisons were made in this study between the two groups of bereaved

parents regarding personal vulnerability. This was described as parents experiencing

more stressful life events and relationships and having a history of mental disorders in

their family. Parents in the suicide group had a higher incidence of being raised in a

divorced or separated household, were raised outside of the home before the age of 15,

and had more family members who were diagnosed with mental illness. In their personal

lives, bereaved parents in the suicide group reported more marital difficulties and higher

incidence of divorce and separation from their spouse. They also had more problems

raising the deceased child than bereaved parents in the accident group (Seguin et al.,

1995). The family difficulties experienced by bereaved parents in the suicide group in

their early childhood may have resulted in difficulties with parenting the deceased child.

Limitation of the study is the use of the FACES III questionnaire to measure

family functioning. The deceased children were young adults and it is conceivable that

they were not living at home therefore the FACES III questionnaire which measures the

relationships of families who are interacting daily might not have been appropriate.

In summary, parent grief has been described as a devastating and traumatic

experience and generates negative feelings, disrupts parent’s emotional and social world

causing severe and even prolonged emotional and physical distress. Research findings

43

have indicated that the ability of families to cope with this traumatic event is influenced

by cause of death, presence of surviving children, social support and the cohesion and

flexibility of the families to adjust to the stressor associated with bereavement. Bereaved

parents may rely on spiritual/religious beliefs throughout the period of grieving to obtain

comfort, create meaning from the loss and help in the healing process that will ultimately

result in the acceptance of their loss.

A major limitation of the studies that examined parent’s grief reaction following

the death of their child consisted of participants who were predominately White and

highly educated which makes the findings of the studies not generalizable to other

ethnic/racial and lower socially economically groups of bereaved parents. Severe gaps

about the grief responses of other races and their use of spiritual/religious coping

strategies are absent in the research literature. Further research on parental grief

responses of other races especially Blacks and Hispanics are needed.

Parents mental health and personal growth

Kreicbergs, et al. (2004) compared 449 bereaved parents (266 mothers, 191

fathers) whose children had died of cancer with 457 non-bereaved parents (251 mothers,

191 fathers) on risk for psychological distress (anxiety and depression), physical well-

being and quality of life at 4- 6 years and 7-9 years after the death of their child. The

majority of parents in both groups were married (73% for the bereaved group and 68%

for the non-bereaved group), employed (82% for both groups) and 41% of bereaved

parents and 45% of non-bereaved parents, stated they were not religious. Ages of the

deceased children were not reported. Bereaved parents were identified from the Swedish

National Register of Cancer and non-bereaved parents from the Swedish population

44

register. Study participants were obtained via recruitment letters and follow-up phone

calls.

Kreicbergs et al. (2004) found bereaved mothers and fathers were more likely to

experience depression, anxiety, and lower quality of life than non-bereaved parents 4-6

years after the loss. Bereaved mothers (32%) were more likely than bereaved fathers

(23%) to have moderate to high levels of depression and 60% of bereaved mothers and

45% of bereaved fathers experienced low to moderate levels of psychological well-being.

This included having low to moderate quality relationships with family members and

involvement in social activities. However, bereaved parents were highly satisfied with

their marital relationship, relationships with their surviving children and quality of life 4-

6 years after their child’s death. This suggests that these bereaved parents may have

voluntarily reduced their social activities, socialized more with family members and

become more focused on the relationship with their spouse and surviving children.

Time since the death influenced bereaved parents acceptance of their child’s

death. At 4-6 years after the death 32% of bereaved parents stated that they had not come

to terms with their child’s death but 7-9 years after the death only 20% of bereaved

parents had not worked through their grief. Seven to 9 years post loss bereaved mothers

were more satisfied with their relationship with their surviving children than non-

bereaved mothers. As suggested in other studies the loss of a child changes bereaved

parents’ perceptions of life, placing more emphasis on family relationships including

their surviving children than before the death. The deceased child’s age also was related

to bereaved parents’ mental health. Bereaved parents, especially fathers, whose children

had died at 9 years of age or older had higher levels of anxiety and depression than non-

45

bereaved parents with children of similar ages 4-6 years after the loss. These symptoms

subsided 7-9 years after the death but long term anxiety and depression were higher for

bereaved mothers than non-bereaved mothers (Kreicbergs, et al., 2004).

Murphy et al. (1999) conducted a longitudinal study that examined the prevalence

of post traumatic stress disorder (PTSD) among 260 bereaved parents (171 mothers, 90

fathers) at 4 months, 12 months and 24 months after the violent death of their child. Ages

of participating parents ranged from 32-61 years (M = 45, SD = 6.01). The bereaved

parents were mostly White (86%) and employed (65%), with a mean of 13.8 years of

education and 80% identified with a religious organization. Cause of death was accident

(58%), suicide (24%) and homicide (10%). Mean age of the deceased child was 20.1

years (SD = 4.4) and time since death ranged from 6 weeks to 7 months (M = 130 days,

SD = 2.0). Bereaved parents were identified from death certificates but place of death

was not reported.

Murphy et al. (1999) found 40% of bereaved mothers and 14% of bereaved

fathers exhibited symptoms of PTSD 4 months after their child’s death, however at 24

months bereaved mothers became less symptomatic for PTSD (21%) but the 14% of

bereaved fathers remained symptomatic for PTSD. Cause of death also affected the

manifestation of PTSD symptoms. At 4 months post death 60% of bereaved parents

whose child had died from homicide developed PTSD: 35% for parents whose child’s

death was accidental and 36% for parents whose child’s death was suicide.

Differences in gender and PTSD symptoms were described by Murphy et al.

(1999) who found that bereaved mothers exhibited higher levels of mental distress

(depression, anxiety, hostility) and more severe grief symptoms than bereaved fathers at 4

46

months post death. Bereaved mothers with PTSD also consumed more alcohol/week than

bereaved fathers with PTSD. Most bereaved parents (51% mothers and 54% fathers)

perceived themselves to be non-productive at work, were frequently absent from work,

and had poorer health outcomes than bereaved parents who did not have PTSD

symptoms. Bereaved fathers whose scores were reflective of PTSD also had poorer

health than bereaved mothers. When compared with bereaved parents who had no

symptoms of PTSD, bereaved parents with PTSD also had lower self-esteem and lower

self-efficacy.

One of the limitations with the study was the instrument selection to measure

PTSD. The instrument was developed by the principle investigator for the purpose of the

study and the psychometric properties of this newly developed instrument are not

established.

Dyregrov, Nordanger, and Dyregrov (2003) examined differences in bereaved

parents’ grief reactions to losing a child who had died suddenly/traumatically and cause

of death. Two-hundred and thirty-two bereaved parents participated (139 mothers, 93

fathers) of which 128 (55%) children died by suicide, 68 (29%) by accident, and 36

(16%) infants to SIDS. The average ages of bereaved parents were 51 years (SD = 8.0) in

the suicide group, 40 years (SD = 8.5) in the accident group and 30 years (5.7) for the

SIDS group. Time of death and participation in the study was between 6 and 23 months

with an average of 15 months for the SIDS and suicide and 14 months for the accidental

group. Place of death and recruitment of study participants was not reported.

Dyregrov et al. (2003) found that most of the bereaved parents in all three groups

experienced severe grief reactions of psychological distress. Bereaved parents whose

47

children had died accidentally had higher scores on the total Impact of Event scale that

measure post traumatic stress (M = 36.3, SD = 14.4), and the subscale intrusion ( M =

22.7, SD = 7.6) and physical complaints (M = 10.4, SD = 7.8) than the other two groups.

Bereaved parents of the SIDS group experienced significantly less physical and

psychological problems than bereaved parents in the suicide or accident group.

Similarities and differences were predicted between the three groups of bereaved

parents in general health, post-traumatic psychological distress, and complicated grief.

For bereaved parents in the suicide group, variables of social isolation, minimal

education, short time elapse since the time of death and not working outside the home

were best predictors of reduced general health and post-traumatic psychological distress.

(Dyregrov et al., 2003).

Variables that predicted reduced general heath for bereaved parents in the SIDS

group were: not working outside the home, social isolation and short time since the death.

Developing post-traumatic distress was best predicted by: social isolation, minimal

education, bereaved mother, not having a surviving child, and losing a male child. For

bereaved parents in the accident group social isolation and not having a surviving child

were the best predictors of reduced general heath. Predictors of post-traumatic

psychological distress were: social isolation, bereaved mother, and having minimal

education (Dyregrov, et al., 2003). Similarities were found in the variables of the best

predictors of complicated grief in all the three groups. Social isolation, bereaved mothers,

and not having surviving children were best predictors of high scores on the Inventory of

Complicated Grief reaction among bereaved parents whose children had died from

suicide, SIDS or accidentally.

48

Song et al. (2010) examined the effects of a child’s death on bereaved parents’

health-related quality of life (HRQoL). Bereaved couples were compared with non-

bereaved couples to determine whether marital closeness, as a source of support helped

bereaved parents maintain better mental and physical health. Bereaved married couples (n

= 233) and a comparison of 229 non-bereaved married couples were selected from a

subset of a larger prospective longitudinal study that investigated the long term effects of

grief of bereaved parents over 40 years. Most of the bereaved and non-bereaved parents

were 64 years old at the time of the study and years since the death of their child ranged

from 16 years to 38 years. Most of the deceased children had died after their first birthday

with 90 deaths (39%) occurring from chronic illness and 86 (37%) from violence. Fifty-

seven infants (24%) died before their first birthday as a result of prematurity, congenital

anomaly or sudden infant death syndrome.

Controlling for demographic factors Song et al. (2010) found that bereaved

parents had significantly poorer mental and physical health than non-bereaved parents.

Differences were seen in bereaved mothers’ mental health status by cause of the child’s

death. Bereaved mothers whose child died from violence or illness (39% and 37%,

respectively n = 176) experienced more episodes of depression than bereaved mothers

whose child died in infancy (24%, n = 57). Bereaved parents who had a close marital

relationship had higher HRQoL and less depressive episodes than bereaved parents who

had lower marital closeness. One of the major limitations of the study was the length of

time between the child’s death and the time that bereaved parents were surveyed.

Bereaved parents completed the HLQoL survey when they averaged 64 years old and

their children had died when they were much younger. Relying on the accuracy of the

49

study participant’s memory when there was a long time delay between their child’s death

and completing the HLQoL survey at the time of the study increases the risk of recall

bias. The homogeneity of the participants limits the application of the study’s findings to

other racial/ethnic groups.

In summary, studies have found that bereaved parents have a higher rate of mental

distress, ill-health and marital problems when compared to non-bereaved parents but

studies that have examined bereaved parents’ psychological adjustment following the

death of their infant/child in the neonatal intensive care/pediatric intensive care units are

limited. Most studies examine the influence of spiritual/religious practices and mental

health outcomes are with adults who were diagnosed with life-threatening illnesses.

There are no studies identified that have examined the influence of spiritual/religious

practices and mental health outcomes in bereaved parents whose children have died in the

NICU/PICU.

Spiritual coping strategies and bereavement

Meert, Thurston, and Briller (2005) explored the spiritual needs of bereaved

parents two years after their child had died in the PICU. Participants consisted of 32

bereaved parents and one bereaved grandmother who was the deceased child’s legal

guardian. Of the 33 bereaved parents interviewed, 55% were White and 45% were

African-American. Median years of education were 13 years with 65% of bereaved

parents attending some college or trade school. Religious affiliation was 64% Protestant,

21% Catholic and 6% Jewish. The median age of the deceased child was 4.5 years with

69% of deaths related to chronic conditions and 31% to acute illness. Almost all of the

bereaved parents (80%-100%) described using prayer, ritual, sacred text; finding meaning

50

and purpose in their child’s death; connecting with the deceased child and connecting

with others as important spiritual/religious coping strategies that helped in alleviating

their pain and providing inner strength and comfort during this stressful time. Anger and

blame at themselves and God was express by 30-60% of bereaved parents.

Meert et al. (2005) found that before the death of their child, bereaved parents

relied on prayer and intercessionary prayers from family, friends and the community for a

favorable outcome and healing for their child. One bereaved father stated that his request

was for God to show mercy by letting his child live and also for strength to bring him

through this terrible ordeal. Prayers from the community were described by bereaved

parents as being very supportive. They requested the hospital chaplain to visit and pray

with the family. Reading inspirational/spiritual text or the scriptures and listening to

spiritual songs were described as important spiritual activities that parents used to

alleviate the stress prior to their child’s death. Bereaved parents reported that these

activities strengthened their faith. Religious rituals of baptism and last rites were

important to some parents as they believed it ensured their child’s soul was committed to

the after-life.

Meert et al. (2005) reported that bereaved parents described their connection to

others as an additional source of spiritual support. Sympathetic presence and reassurance

from spouses, family, friends, co-workers, clergy, and healthcare professionals was

perceived by bereaved parents as being helpful in relieving their pain and stress. One

mother described the caring actions of others, connecting to other bereaved parents,

receiving hugs, and being able to talk about their deceased child were helpful connections

that was supportive. Just telling their story was described as spiritually supportive.

51

Similar findings were described by Robinson, Thiel, Backus, and Meyer (2006)

who surveyed 56 bereaved parents 1-2 years after their child’s death in the PICU. Ages of

the deceased children ranged from newborn to 18 years old. Bereaved parents were

predominately White (91%), with 50% identifying their religious affiliation as Catholic,

34% as Protestant, 5% Jewish, 2% Muslim and 9% had no religious affiliation. Bereaved

parents responding to open-ended questions identified using spiritual/religious coping

strategies to deal with their loss.

The use of prayer, relying on their faith in God, having access to and care from

the clergy, and a belief that the parent-child relationship transcends to a life beyond death

were all coping strategies that they identified as being helpful during their child’s last

days prior to their deaths. Praying for strength, putting their trust in God who was in

charge of their child’s life, knowing that their child’s suffering would be over, and that

they were in heaven provided comfort to these bereaved parents. Access to their spiritual

adviser was helpful especially when the decision whether to withdraw life support had to

be made. Several parents found comfort in their belief that their connection to their child

continues into a life beyond death (Robinson et al., 2006).

Raingruber and Milstein (2007) conducted a phenomenological study that

described the lived experience of parents whose infants were admitted to the NICU with

life threatening illness. Of the four mothers and three fathers who agreed to be

interviewed two parents had suffered the loss of their child. Parents described the use of

spiritual/intuitive experiences and searching for circles of meaning as coping strategies

that provided comfort and relieved their stress (Raingruber & Milstein, 2007).

52

Parents whose children had died stated how important it was to know that their

child’s life was valued by others. That their child mattered helped to ground the parents

during this time of crisis. One bereaved father stated that in making meaning of his

daughter’s death, he found comfort in the numerous lives she touched by her presence.

The bereaved father further stated that his daughter’s premature death signified that God

must have had a plan for her to accomplish other things in heaven. He described this

belief as giving him peace (Raingruber & Milstein, 2007).

Connecting to others was another spiritual experience that provided comfort and

relieved stress. One mother described how her estranged father’s visit to see his sick

grandchild helped her to cope during this stressful time. His presence demonstrated that

he cared about them which gave her joy and revitalized her spirit (Raingruber & Milstein,

2007).

Lichtenthal, Currier, Neimeyer, and Keese (2010) conducted a mixed method

study to identify how 153 bereaved parents (124 mothers, 29 fathers) made sense or

meaning of their child’s death and grief outcomes. Ages of the bereaved parents ranged

from 23-77 years (M = 49.4, SD = 10.58). Ninety-two percent of the participants were

White with the remainder, 3.8% African-American and 3.2% biracial. The deceased

children’s ages ranged from 0-47 years (M = 17, SD = 10.54) and the average length of

time since death was 6 years. Causes of deaths were: motor vehicle crashes (45%), heart

attack (20%), cancer (12%), suicide (11%), homicide 6% and miscarriage/stillbirth (6%).

The majority of bereaved parents (91%) had surviving children. Place of death was not

reported.

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Bereaved parents were found to use three patterns of meaning-making to cope

with their grief: Sense-making, benefit finding and other salient meanings. The Core

Bereavement Items (CBI) and the Inventory of Complicated Grief (ICG) were used to

measure normal emotional reactions and maladaptive reactions to bereavement. Within

the sense-making category the most common theme that emerged from parents trying to

understand why their child died was the reliance on spirituality and religious beliefs. A

number of bereaved parents (n = 28, 17.9%) believed that their child’s death was God’s

will and a part of His plan (Lichtenthal et al., 2010).

Similarly, belief in the afterlife, that their child was safe in heaven, and that they

would be reunited with their child was another common theme that parents (n = 25, 16%)

used to make meaning of their child’s death and proved helpful in coping with their grief.

Significant differences were found in the use of spiritual beliefs to validate their child’s

death with more mothers than fathers describing the death as God’s will (Lichtenthal et

al., 2010).

In the benefit-making category enhancement of spiritual and personal growth was

another theme that most bereaved parents (52.6%) saw as making meaning of their

child’s death. Parents identified several positive changes in themselves. They stated that

becoming more compassionate, caring and sensitive to the needs of others (16.7%),

having a greater appreciation for life (14.7%), strengthening their relationships with

spouse, surviving children and family members (12.2%) and reaching out to other

bereaved parents (21%) were meaningful changes that resulted from their child’s death.

Forty-five percent of bereaved parents reported seeing no benefit in their child’s death

(Lichtenthal et al., 2010).

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In the salient category bereaved parents described both positive and negative

feelings they experienced following the death of their child. For some parents, talking

about their loss (12.2%) was helpful or healing; for others appreciating the time spent

with the child before their death (12.2%) and accepting the death because they cannot

change the circumstances (10.3%) were described as beneficial in coping with their loss.

Other parents (14.1%) continued to feel sadness and pain associated with the death and 3

parents stated that they were unable to accept the death (Lichtenthal et al., 2010).

On the ICG, 55% of bereaved parents had scores above the clinical cut off which

was indicative of being very distressed (M= 29.8, SD = 16.1) and on the CBI, bereaved

mothers obtained significantly higher scores than fathers. Higher scores were related to

more recent deaths (r = -.42, p<.05) and older child (r = .19, p<.001) Bereaved parents

whose child’s death was related to violence had higher CBI scores than parents whose

child’s death was anticipated. Content coding from the qualitative responses of bereaved

parents were compared with their CBI scores to determine predictors of prolonged grief

disorder. Bereaved parents who found no sense to their loss (β = .24, p<.002) and no

benefit to their loss (β = .17, p<.002) had higher CBI scores than parents who were able

to derive at least one benefit from their loss (β = -.21, p<.01). Parents who were able to

make sense of their loss (β = .18, p<.01) and make meaning from their loss (β = -.16,

p<.05) had lower severe grief scores on the ICG. Bereaved parents had less severe grief

scores if they believed in the existence of a higher power/God, that it was His will and a

part of His plan that their child died, were able to change their life priorities because of

their loss, and were relieved that their child was no longer suffering. The limitation of

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this study included the underrepresentation of other ethnicities/races and therefore the

results of the study can only be applied to white mothers and fathers.

McIntosh, Silver, and Wortman (1993) examined the role that religion played

over time in the lives of 124 bereaved parents, 98 (79%) bereaved mothers and 26 (21%)

bereaved fathers, as they adjusted to the death of their infant to sudden infant death

syndrome. Fifty percent of the participants were Black, 45% White, and 5% other

ethnicities. The ages of the deceased infants were 2-4 months. Bereaved parents were

contacted by mail seven days after their baby had died and interviews were conducted

two to three weeks post death with follow-up interviews at three months and 18 months.

Bereaved parents were asked to describe, on a scale of 1-5 how important religion was to

them and how often they attended religious services. Religious affiliation consisted of

45% Baptist, 37% Catholic, 3% Jewish, and 15% other religious groups.

Bereaved parents who reported greater church attendance had greater social

support to help them deal with the loss. They also had better emotional adjustment three

weeks after their infant’s death and, at 18 months, had lower levels of emotional distress

and higher levels of well-being. Bereaved parents who identified religion as being very

important to their lives were also more likely to engage in activities that would help them

to work through the loss and search for meaning that would help them make sense of

their infant’s death (McIntosh et al., 1993).

The results of the study indicated that religion alone had no direct effect on

bereaved parents’ adjustment to their loss. Bereaved parents who attended religious

services and stated that religion was important to them but also had greater social support

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and could find meaning as to why their infant died had greater levels of well-being at 18

months after the death of their infant (McIntosh et al., 1993).

In other studies where most of the participants are White, this is one of the few

studies by (McIntosh et al., 1993) where African-Americans, compromised 50% of the

participants. The major limitation of the study was that the two religious questions asked

of the participants were single item measures. A single item measure may offer a less

comprehensive explanation on the importance of religion as a coping strategy and its

effect on bereaved parent’s adjustment to their infant’s death. As most of the participants

were Christians, the results cannot be generalized to people with other religious beliefs.

To cope with their grief bereaved parents also maintain a spiritual connection to

their deceased child (Klass, 1999). Sormanti and August (1997) explored the

feelings/beliefs of the existence of a spiritual connection between 43 bereaved parents

(79% mothers and 21% fathers) and their deceased child and its effect on their grief.

Most participants were White (98%), had one or more surviving children (95%), and

were 36-45 years old. Most of the study participants (86%) were Catholic, 26%

Protestant, 12% none and 2% other. Length of time since death and participation in the

study for most parents (56%) was 24-72 months, 26% 12- 24 months and 18% 12

months. All of the children died from cancer with 46% dying within a year of being

diagnosed, 23% dying between 1-2 years and 10% dying more than 5 years after their

diagnosis.

Bereaved parents described remaining spiritually connected to the deceased child

in their dreams. These dreams were described as receiving a visit from their deceased

child and included feeling their presence through holding of hands with them or receiving

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a kiss on the cheek from them while dreaming. The dreams and presence were interpreted

as a sign that the deceased child was still with them, assisting them in their daily life by

helping them to cope with their grief. One mother stated that several times she would be

crying excessively and the phone would ring and it was always someone calling that

would help her to feel cheerful. She attributed these phone calls to the deceased child

intervening and making that person call her. Another mother describe how when she is

feeling tired she can always feel a kiss on her neck from the deceased child which she

described as comforting. One father stated that on his frequent walks he often felt the

presence of his deceased child and this resulted in feelings of inexplicable joy and

exhilaration (Sormanti & August, 1997).

Several bereaved parents stated that when they were troubled, they would request

a sign from the deceased child indicating their presence. Seeing a very bright star on a

cloudy night at the time of the request, or hearing a special music that reminded them of

the deceased child were, to them, signs indicative that their deceased child was at that

moment present with them. Talking with the deceased child frequently and holding

firmly to the belief that the deceased child will always live in their heart and soul were

other ways that bereaved parents stayed spiritually connected to their deceased child

(Sormanti & August, 1997).

For the majority of bereaved parents the spiritual existence of their deceased child

provided them with peace and happiness during their time of sorrow as they felt closer to

their deceased child and God. Additionally, some bereaved parents (33%) believed in

heaven which they saw as a peaceful, happy and safe place where pain was eliminated

and where they would later be reunited with the deceased child. They were comforted in

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knowing that their deceased child was with God and with other deceased relatives who

would meet and greet them when they arrived in the after-life. The majority of bereaved

parents (79%) stated that their religious belief, cultural background or community

influenced their belief which gave them a sense of hope and tolerance for the uncertainty

of life after death (Sormanti & August, 1997).

Most parents also stated that their beliefs about life after death had changed

following the death of their child. Some parents stated that their belief in God was

strengthened following the death of their child, others reported that their belief in God

emerged after their child died, others, especially those who were ambivalent about life

after death, became convinced that an after-life existed following their child’s death

while others stated that their belief in the after-life changed following their loss. One

father stated that it was impossible to believe that the spirit of his deceased son had gone

to an after-life and while he accepted the non-existence of his son’s body the spirit of his

deceased child became a part of him and lives with him forever (Sormanti & August,

1997).

The majority of participants in the Sormanti and August (1997) study were White

and Christians therefore the results of the study are applicable only to this population.

Examination of bereaved parent’s spiritual connection with their deceased child who used

coping strategies not related to religious practices to provide comfort would provide

information on non-religious coping strategies. Ages of the deceased children were not

reported, even though other researchers have reported a correlation between age of the

deceased child and intensity of bereaved parent’s grief response.

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Gilbert (1992) explored the ability to find comfort in religious beliefs of very

religious bereaved parents following their loss. Additionally, the research investigated

whether their religious beliefs and/or their views of religion and God changed following

their loss. Twenty-seven bereaved couples described their grief experience 6 months to 7

years following the death of their child. Ages of the bereaved couples ranged from 26 to

42 years and they had been married for 3 to 14 years. All of the study participants were

White; education, socio-economic status and religious affiliation were not stated. Most of

the bereaved parents (67%) had experienced a neonatal death (12 died during the first

month of life and 6 died after one month) and 33% had first and second trimester losses.

Some parents stated that their belief in God was helpful to them during this

traumatic event. Finding strength through their religious beliefs, not questioning God’s

actions because He is in control and had their best interest in mind, and not blaming God

for the terrible event were some of the feelings expressed by bereaved parents. Bereaved

parents expressed their belief that the death of their infant was God’s will and only God

knows why their child died. They said that deepening their relationship with God through

prayer gave them comfort and brought peace into their lives (Gilbert, 1992).

Gilbert (1992) also found that when the bereaved parents were asked the question

of “Why me,” they did not express anger with God nor did they feel that God was

punishing them, and they did not blame their tragedy on Him. Instead, through their faith,

they believed that God’s intent was for them to have a greater appreciation for life and to

change their lives for the better. Several bereaved parents became more involved in their

church activities, becoming lay ministers and helping other bereaved parents.

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Gilbert (1992) identified 8 women and 4 men in the study who did not find

religious beliefs to be helpful during their time of grief. Although most of them attended

church and maintained their religious values, their views of God changed following the

death of their child. They were angry with God and described Him as being judgmental,

punitive, hateful and vengeful and could not believe that God had allowed this to happen

to them. These bereaved parents who did not find religious beliefs helpful also expressed

anger when support was offered by ministers or priests. They were not comforted with

pastoral support that described their infants as being angels in heaven, or that it was

God’s plan that we may not understand, or this event will make them have a greater

appreciation for life. Many of these bereaved parents also felt that they failed their child

and now they were being punished by God. Only the group of bereaved parents that

expressed negative feelings about God presented with suicidal ideation or a desire to die

so that they could be with their child. Conversations with other bereaved families and

support from church members resulted in a reduction of their feelings of anger toward

God over time.

Another group of bereaved parents, 5 mothers and 7 fathers, stated that religious

beliefs was not relevant prior to their infant’s/child’s deaths and were not utilized during

their time of grief. Coping strategies used to provide comfort included maintaining a

strong marital relationship, receiving support from family members and obtaining

medical information about their infant’s illness, cause of death, risks of a similar

occurrence with future pregnancy and receiving information that helped them to

understand the grief process (Gilbert, 1992).

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Research has shown a positive correlation between spiritual/religious coping

strategies and psychological adjustment of parents whose children are diagnosed with

life-threatening illness (Cardella & Friedlander, 2004; Elkin et al., 2007). The Cardella

and Friedlander (2004) study aimed at identifying a relationship, if any, between the use

of five religious coping strategies and psychological distress experienced by parents

whose children were diagnosed with a terminal illness. One hundred and sixty-six

parents, (113 mothers, 53 fathers), whose children were being treated for cancer or were

in remission for one year were asked to complete a mailed survey that addressed their

religious coping strategies and psychological distress. The majority of parents stated that

they were Catholic (46%) or Protestant (35%), married (85%) and had a socio-economic

index above midrange.

The results of the study revealed two demographic variables, annual household

income and gender, to be significantly related to higher levels of psychological distress.

Parents with fewer financial resources and mothers showed greater psychological

distress. Two of the religious coping strategies, collaborative religious coping and

pleading for direct intercession from God, were related to higher levels of psychological

distress. Parents who believed that they had collaboratively entered into a partnership

with God to help them find solutions to treating their child’s illness and parents who

pleaded with God for a miracle to heal their child had greater psychological distress.

Parents who identified themselves as Christians and whose children were being treated

for cancer or in remission and reported using collaborative religious coping had lower

levels of psychological distress than parents who were not affiliated to a religious

organization or whose children were in the terminal stages of cancer.

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Elkin et al. (2007) examined the use of religion as a coping strategy in 27

mothers of children diagnosed with cancer and its relationship to the mother’s

psychological adjustment. Parents were recruited from a follow-up clinic and completed a

set of questionnaires that included their religious beliefs and practices and current

emotional functioning. The participants were White (56%) or African American (41%).

Most of the mothers stated that they were Christians, with 63% being Baptist, and two

mothers reported no religious affiliation. The mothers who stated that they were

Christians also stated that they have a high level of religious beliefs and behaviors. The

mothers who reported no religious affiliation reported low levels of religious belief and

behavior. The average child’s age M = 12.78 (SD = 4.1) years, 56% were males and they

had been receiving treatment for 17 months.

Elkin et al. (2007) found that 74% of the mothers reported an increase in religious

belief since their child’s diagnosis, 15% reported no change and 11% reported a decrease

in their religious belief. Most mothers also reported an increase in religious behaviors, for

example giving money to church groups and actively participating in religious

organization. The average depression score for these mothers identified them as mild to

minimally depressed (M =13.7, SD = 12.4) with 4 mothers exhibiting severe depressive

symptoms, 3 being moderately depressed, 1 mildly depressed and 19 minimally

depressed.

Mothers with few depressive symptoms reported higher levels of religious beliefs

and behavior. Mothers whose scores identified them as being depressed reported

significantly less religious beliefs. Although the results showed a positive correlation

between religious beliefs and mental health, this small sample with predominately

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Christian mothers which make the results applicable only to mothers of the Christian

faith. The mother’s level of education and income were not reported.

The meanings that manifest from believing in God or a higher power often are

used to provide a sense of security and bring peace. The Schineider and Mannell (2005)

phenomenological study explored the use of spirituality as a coping strategy by four

mothers and four fathers whose children were diagnosed with a terminal illness. All held

college degrees and all identified themselves as being infrequent church goers who

subscribe to some form of organized religion.

Most of the parents identified spirituality as being important in providing some

support throughout their child’s illness. Belief in God or a higher power was identified as

a source of strength and comfort throughout these stressful times. One father stated that

his belief that God was in control over his child’s journey with cancer helped him to deal

with the reality of his child’s illness and not to blame others for his child’s diagnosis

(Schineider & Mannell, 2005).

Schineider and Mannell (2005) found that faith was a significant theme that

emerged from the parent’s description of the religious aspect of their spirituality. Having

faith was another important religious coping strategy used by these parents as they

attempted to navigate the tragedy associated with their child’s illness. Both mothers and

fathers described their faith as a source of comfort as they grappled with the uncertainty

of the outcome of their child’s cancer diagnosis.

Some parents discussed their doubts about their faith and the existence of a God

that allows children to suffer. Some parents described how their faith wavered especially

when their child’s condition deteriorated, but eventually they returned to their original

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beliefs in God. Church attendance was also viewed by these parents as valuable in

helping them to cope with their child’s illness. Parents described the following benefits of

attending church: renewal of energy, regrouping, reflecting on their situation, and

serenity. Parents stated that these benefits helped in negating the feeling of loneliness

(Schineider & Mannell, 2005).

Praying was found to be an important and powerful religious coping strategy.

Parents referred to prayer as having the power to heal their child and also helped them to

cope with their child’s illness. Prayer was described as strengthening their resolve to fight

for their child to survive. Some parents spoke about the power of prayer and its impact on

their child’s health. One father stated that his prayer to God was for an improvement in

his child’s health and the next day his prayers were answered. Parents described an

additional benefit of praying as actively doing something beneficial for their child in an

otherwise uncontrollable situation (Schineider & Mannell, 2005).

Intercessional prayers from church members, prayer networks organized within

the community of their church, family members and friends were perceived by these

parents to be helpful. Additionally, communicating with their priest was described by

parents as another religious coping strategy that provided support and guidance. The

priest became their counselor and spiritual advisor, made home visits when requested,

and performed various rituals of the church to their children in their homes (Schineider &

Mannell, 2005).

Parents also used spiritual coping strategies that were not related to religious

practices. These strategies included seeing the positive side of things and appreciating

what nature had to offer. Parents described sitting on the porch and soaking up the

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sunshine as feeling very peaceful, meditating, being in the outdoors and communing with

nature, being in the woods and watching the animals moving around, or hearing the birds

sing as activities that were comforting, calming, relaxing and peaceful (Schineider &

Mannell, 2005).

Wilson and Miles (2001) explored the use of spirituality as a coping strategy for

14 African American mothers whose chronically ill infants were admitted to either the

NICU/PICU. Mothers’ mean age and years of education was 27 and 13 years

respectively. Most of the mothers were single (60%) and unemployed (70%). Children at

the time of interview were M = 19 months old and all of the children had chronic

respiratory disease with 29% also having congenital heart defect.

Praying to God for help with their child’s illness and acknowledging that He is in

control of their child’s fate was coping strategies used by 79% of mothers. Reading the

bible and receiving support from others provided hope and comfort. Knowing that God

would take care of their child was described as effective in reducing these mothers’

anxiety and feelings of helplessness. Prayer for 43% of the mothers provided a conduit to

establish and maintain a personal relationship with God who helped them to cope with

their child’s illness (Wilson & Miles, 2001).

Prayer also provided additional support from church members, pastors, family

members and friends. Pastors often visited the hospitalized child and performed rituals,

for example, praying at the bedside and baptizing the sick child. The mothers described

the support received from their pastors as helping them to believe in the power of prayer.

Intercessionary prayers from church members, family and friends also helped the mothers

to believe that their child would survive (Wilson & Miles, 2001).

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The mothers believed that because God had the ability to keep their child alive

they were willing to become emotionally attached and physically involved in caring for

their child. Hesitancy to become emotionally involved with her child may be indicative of

the mother’s belief that without God’s help her child would not have survived illness

(Wilson & Miles, 2001).

Two mothers (14%) described how their faith in God was tested as they were

unable to comprehend why God allowed their child to be sick. One mother expressed

bitterness and anger at God and was experiencing difficulty in maintaining a relationship

with God. Six (43%) mothers described their faith as strengthened and some of the

mothers became more active in their church. These mothers also felt that they became a

stronger person and others stated that they recognized the fragility of life and placed a

higher value on life (Wilson & Miles, 2001).

In summary, Studies that examine spiritual/religious beliefs and practices and can

reduce negative psychological symptoms for bereaved parents and parents of children

with a life threatening illness. There are few current studies that have examined spiritual

coping strategies and bereavement and no longitudinal study that examined the use of

spiritual coping strategies among bereaved parents whose infant/child died in the

NICU/PICU were identified. Additionally, most of the bereaved parents who participated

in the studies were Christians, leaving a gap in knowledge about bereaved parents from

other religious and non-religious groups.

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Gender differences and spiritual coping strategies

The differences in gender role in our society where the mother is seen as being

very emotional and the father as the stoic one who is not suppose to cry has lead to the

assumption that fathers grieve differently and recover at a faster rate than mothers.

Lang, Gottlieb, and Amsel (1996) examined how gender bereavement reactions

changed over time and its impact on marital relationships of couples whose infant had

died under the age of one year. The study sample consisted of 31 bereaved couples who

were predominately White, of low to middle income, and had been married or living

together for an average of 10 years. Cause of death ranged from congenital anomalies to

sudden infant death syndrome.

Bereaved couples completed the surveys 1-2 years after the death of the infant

and the follow-up survey was completed 2 to 4 years later. Bereaved couples’ were

interviewed in their homes with husbands and wives completing their surveys

independently. Bereaved couples’ emotional, physical and behavioral reactions to their

grief and perceptions of marital intimacy were explored. Emotions such as fear, guilt,

anger, yearning, depersonalization, isolation and meaninglessness were examined. The

responses of the bereaved couples were compared with 36 non-bereaved couples of

similar demographic background (Lang et al., 1996).

Changes were evident in bereaved couples’ grief reactions from the initial visit at

1-2 years to the follow-up visit 2-4 years later. With the exception of somatization, the

intensity of the bereaved couples’ grief reactions were lower at the follow-up visit than

the initial visit. However, bereaved wives continued to exhibit higher grief reactions than

their husbands at both the initial and the follow-up visit. Bereaved fathers had less guilt,

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meaninglessness, yearning and morbid fear than their wives two to four years after the

death of their infant. Compared with non-bereaved couples, bereaved couples had

increased feelings of depersonalization 2 to 4 years after the death of their infant (Lang et

al., 1996).

Lang et al. (1996) found that marital intimacy was compromised for some

bereaved fathers. Bereaved husbands who reported having less sexual intimacy two to

four years after their infant’s death also had increased feelings of fear and isolation. They

experienced more somatic symptoms and feelings of being blamed by the other partner

for the death (stigma). However, fathers who shared common interests with their wives

(social intimacy) experienced less grief symptoms of meaninglessness and stigma. The

risk of marital separation increased if they were unable to share their partner’s interests,

and if sexual intimacy occurred shortly after the death of their child. Husbands also

reported having more guilt, yearning, depersonalization and stigma if the data were

collected close to the anniversary date of the child’s death.

Communication was another factor identified by Lang et al. (1996) as important

in the marital relationship two to four years after their infant’s death. Bereaved mothers

experienced less guilt, anger, yearning, depersonalization and morbid fear if they were

able to share their thoughts and feelings soon after the death with their partner. Bereaved

mothers who had poor communication with their partners experienced more guilt and

yearning. Greater social intimacy with their husband resulted in less isolation, anger,

meaninglessness, stigma and morbid fear. Similar to their partners, bereaved mothers also

experienced increased emotional and physical symptoms if the interview was conducted

close to the anniversary date of the infant’s death.

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Kamm and Vandenberg (2001) examined the impact of communication, whether

negative or positive, on 36 bereaved couples’ marital relation and adjustment to their

grief for their child who had died between the ages of 2 and 18 years old. The majority of

the bereaved couples were White (93%), their mean age was 47 years (SD = 8.2) and

average time since the death of their child was 4 years and 10 months. Most parents

(89%) reported that the death occurred suddenly.

Kamm and Vandenberg (2001) found that bereaved couples who were able to

communicate positively about their grief and those for whom there was longer time since

the death of their child had less grief reactions. Time since the death also affected

bereaved couples’ grief scores with couples who communicated negatively about their

grief irrespective of time since the death of their child had intermediate levels of grief

reactions. Grief reactions were high for couples who were able to communicate positively

about their grief but whose child had died more recently.

Kamm and Vandenberg (2001) also found that bereaved husbands’ and wives’

grief communication scores were moderately correlated r = .45, and bereaved couples had

significant differences in their attitude of grief communication with wives exhibiting

significantly more positive attitudes about grief communication than their husbands.

Bereaved fathers who valued communicating openly with their spouses about their grief

reported higher levels of grief if the time since death was greater or equal to 5 years.

Bereaved fathers whose children had been dead for over five years and practiced open

communication with their spouses reported lower grief scores. Bereaved fathers who had

minimal communication about their grief with their spouses had intermediate levels of

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grief reaction irrespective of the time since their child’s death. Bereaved mothers’ valued

open communication about their grief more than their spouses.

Examination of grief communication between couples and marital satisfaction

found that bereaved mothers who valued and had open grief communication with their

spouses also reported higher marital satisfaction during the first 5 years after their child’s

death. Bereaved mothers who reported having a negative attitude about grief

communication expressed having more marital dissatisfaction during the same time

period (Kamm & Vandenberg, 2001). Limitation of the study included the small sample

and recruitment of participants from a support group which stressed grief communication.

The majority of participants were White. Causes of the children’s death were also not

reported.

Vance, Boyle, Najman, and Thearle (2002) in their longitudinal study examined

bereaved couples’ emotional and marital distress following the sudden death of their

infants. One hundred and thirty-eight bereaved couples whose infants had died from

sudden infant death syndrome or perinatal death participated in the study. Their responses

were compared with 158 non-bereaved couples with similar demographics. Couples were

interviewed in their homes at 2, 8, 15 and 30 months following the death of their child.

The bereaved couple’s anxiety, depression, marital satisfaction and alcohol use was

examined to determine their adjustment over time to the death of their infant.

Bereaved couples (43%) at two months after their child’s death had increased

levels of anxiety and depression than non-bereaved couples (13%). Bereaved couples

distress decreased over time with 25% reporting symptoms of anxiety and depression at

eight months versus 13% of non-bereaved couples. Only a few bereaved couples (11%)

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experienced anxiety and depression simultaneously at two months but the number

decreased to 3% by 30 months. Anxiety and depression of bereaved mothers and fathers

varied with bereaved mothers reporting a decline from 21% at 2 months to 10% at 30

months. However, the bereaved fathers’ levels of anxiety and depression increased from

12% at 2 months to 15% at 30 months. Bereaved mothers, but not their partners, who had

increased anxiety and depression at two months had greater dissatisfaction with their

marriage at 30 months. If bereaved mothers were not distressed irrespective of time and

whether their partners were distressed, they were more likely to experience marital

satisfaction. Distress for bereaved fathers was not associated with marital satisfaction

irrespective of their partner’s distress soon after their infant had died. Among the non-

bereaved couples 91(81%) experienced no symptoms of anxiety or depression at all four

time points.

Alcohol use was more prominent in fathers of both groups with 7-12% of

bereaved fathers and 5-6% of non-bereaved fathers consuming five or more alcoholic

drinks a day. In contrast, only 1% of bereaved and non-bereaved mothers reported a

similar consumption of alcoholic beverage. The differences in psychological distress seen

between bereaved mothers and fathers were possibly due to alternative response of

coping with grief rather than less intense feelings about the loss of their child (Vance, et

al., 2002).

Moriarty, Carroll, and Controneo (1996) described the grief responses of 50

bereaved couples or mothers who were living with a significant other and had

experienced a sudden unexpected death within two weeks to two years. The sample was

described as heterogeneous in income, education and ethnicity/race with 33% of mothers

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and fathers White and 32% of the mothers and 28% of the fathers Black. The mean age of

the bereaved mothers was 28 years (range 19 to 35 years) and bereaved fathers 31 years

(range 19-59). Most of the deceased infants had died from SIDS (84%) and 16% were

stillbirths. Ages of the deceased infants and place of death was not reported. Bereaved

parents were recruited from a bereavement support network and the SIDS information

counseling program.

On the Global Severity Index, bereaved mothers obtained higher scores than

fathers on the subscales of somatization, obsessive-compulsion, interpersonal, sensitivity,

depression, anxiety, phobic anxiety. Bereaved mothers and fathers scores on the anger

and hostility subscale were similar. Feelings of being easily annoyed, having frequent

arguments, shouting and throwing things were reported by both parents.

Armentrout (2009) interviewed four couples who had participated in a larger

study on bereaved parents’ grief reaction following removal of their infant from life

support. Most of the mothers felt that initially they were on the same page with their

husbands but after about five to six months things began to change; they were still tearful,

visiting the cemetery daily, researching on the internet and wanting to talk frequently

about their deceased child. Fathers had to be engaged in physical activities that included

sorting out the garage and doing repair jobs around the house. One mother stated that her

husband was very uncommunicative about the death of their child and she would insist

that her husband share his feelings with her. All the mothers felt that their husbands went

through the grieving process more quickly, but they were not resentful of their husbands

as they understood that their husbands were not indifferent to the death of their child but

that they were grieving differently.

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In summary, the grief responses of bereaved couples to the death of their

infant/child can affect their mental health and marital relationship. Studies that have

explored differences in bereaved couples grief reactions have found mother’s to

experience poorer mental health outcomes and longer recovery time in adjusting to their

grief than their spouse. Marital closeness, greater social intimacy and being able to

communicate openly with their spouse/partner about their grief resulted in less negative

grief reaction and higher marital satisfaction. Studies that have examined the differences

in bereaved parents coping with grief have focused on psychological distress or

differences in communication. Research studies that describe differences in grief reaction

between mothers and fathers who have used spirituality as a coping strategy have not

been reported.

Influence of Race/Ethnicity and bereavement

Culture, race/ethnicity and religious beliefs influence an individual’s response to

death and grief. They influence their grief reaction to the death of their loved one and

their perception of the afterlife (Kongnetima, Lai, & Berg, 2008). Doran and Hansen

(2006) explored the ways that Mexican-American families maintained a bond with their

deceased child. Semi-structured interviews were conducted which allowed parents to

describe their grief experience. The families remained connected to their deceased

children in a variety of ways. Bereaved parents reported having ongoing dreams where

they would see and talk with their child. Sensing the deceased child’s presence and

believing that the child is a guardian angel for the family were other ways that the family

remained connected to the child. One mother described how her children would serve the

deceased brother tea during their daily tea party play game. Bereaved parents often

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reminisced through storytelling about their last interaction with the child before he or she

died. Keepsakes and cherished objects such as toys, blankets and clothes were frequently

unpacked, washed and repacked, or slept with as a reminder of their child.

Doran and Hansen (2006) found that spiritual and religious beliefs were an

additional source of comfort for the families. Believing that their child is in heaven and

that they will be reunited with their deceased child later in life provided additional

consolation to all the bereaved parents. One family hung the Virgin of Guadalupe over

the deceased child’s bedroom door to provide protection for him in the afterlife. Ongoing

rituals that connected and honored the deceased child were maintained by the families.

They included visiting the grave and requesting special mass to be said on the birth and

anniversaries of their child’s death.

Neighborhood religious Day of the Dead celebrations were held annually. On this

day some families prepared and ate the deceased child’s favorite meal which they

described symbolic of eating with their child. One mother stated that she placed a special

type of flower, believed to attract the spirit to the dead into the house, to try to get her son

to visit them. The deceased parents described these rituals as comforting. Photographs of

the deceased child would be placed on an altar and prominently displayed in the homes.

The altar was elaborately decorated, with the child’s picture being surrounded by

religious figures, candles and flowers. This ritual served as a constant reminder of the

child which the family expressed as keeping the deceased child close to them (Doran &

Hansen, 2006).

Spiritual coping strategies are reported as being effective in minimizing the grief

reaction associated with pregnancy loss. Van and Meleis (2003) using semi-structured

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interviews explored the coping strategies used by 20 African-American mothers

following involuntary pregnancy loss. The average age of the bereaved mothers was 32

years; 60% were married/partnered, college educated, and employed; 45% reported

incomes ranging from $50,000 – 99,000, and 70% were Christians.

Having supportive family and friends and talking to others with similar

experience were described as being very helpful. The mothers who held religious beliefs

identified prayer and asking God for strength as being very important in coping with their

grief. Praying frequently provided them with peace and guidance. Bereaved mothers who

believed that their sins resulted in a miscarriage/stillbirth or fetal death used prayer to

apologize to God for the sins, asked for forgiveness and assistance in the provision of a

positive outcome with future pregnancies. Maintaining or developing a relationship with

God was identified as being very important. Believing in a God who was their protector

and their source of strength, who does things for a reason and who has the ability to

resolve their problems was described as comforting for these bereaved mothers (Van &

Meleis, 2003).

Meditation was an additional spiritual coping strategy used by bereaved mothers.

Looking internally and connecting to self was described as a way of gaining inner

strength to determine how best to cope with their loss and to evoke peace and healing.

The time spent looking inward was described by one mother as sitting quietly, talking to

herself, reflecting, and searching for understanding about the events surrounding the

death. It was also a time used to try to forgive herself for not doing more (Van & Meleis,

2003).

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Smith (2001) in a qualitative exploratory study examined the importance of

religious beliefs in bereaved African-American daughters to provide meaning and ways

of coping with the loss of their elderly mothers. The majority of participants believed in

God or a higher power that came down and carried their mother to heaven and that she is

in God’s hands who is taking care of her. This provided comfort to the daughters of the

deceased because they believe their mother is in a better place, is free of pain and

suffering, and is reunited with other family members who had died. It was also believed

that communication with their mothers was ongoing because the death occurred with the

body, but the spirit lived on; they believe in an after-life which, if they are good in this

life, will allow for later reunion with their mothers.

In summary, the research have identified religious/spiritual practices of different

race/ethnic groups as being very important in helping with the resolution of the grieving

process. Rituals across race/ethnic and religious/spiritual groups are carried out to

provide comfort to the bereaved and in remembrance of the deceased. Religious/spiritual

rituals also serve to help the bereaved family cope with the loss, provide emotional peace

and comfort against the pain that accompanies the loss, and provide continued connection

with the deceased. Cultures that embrace a religious background view death as the end of

a physical presence, but it does not preclude a sense of connectedness (Harrison, Khan, &

Hsu, 2005). Bereaved families maintain ties to the deceased in a variety of ways

including remembrance of the occasion of death through dreams, conversations, mass and

other rituals. Studies on the influence of race/ethnicity on bereavement in the neonatal/

pediatric population were not identified.

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Summary

The highly technologic and fast-paced environment of the NICU/PICU is often

overwhelming, frightening and extremely stressful to parents. Parents are faced with

numerous decisions regarding the care that their critically ill infants/children receive

including the decision to limit/withdraw life support. It is clear from the literature that

when death is imminent in the NICU/PICU bereaved parents are often active participants

in their infant’s/child’s care prior to and immediately after the death had occurred. Being

able to perform certain rituals, for example having the infant/child baptized before death

or receiving last rites, and having a designated space where other family members can be

present and say good-bye before the infant/child died are important in helping bereaved

parents cope emotionally with their loss (Brosig et al., 2007; Kavanaugh et al., 2005;

Meert et al., 2009; Meyer et al., 2006).

The stressors created by the death of a child in the NICU/PICU often result in the

manifestation of emotional and physical symptoms by bereaved parents. Grieving parents

experience emotional, physical and social changes. Emotionally bereaved parents exhibit

signs of anxiety and depression, anger, blame, guilt, loss of control and disorganized

thought processes. Physical symptoms of health problems and behavioral changes can

result in loss of appetite, changes in sleep patterns, headaches, muscular pain, fatigue, and

gastrointestinal changes such as nausea and vomiting. Socially, parental grief is

associated with feelings of emptiness, loneliness, and yearning. These feelings have the

potential to threaten inner self especially if they become focused on self-blame and

perceive themselves as failing to protect their child from harm (Barrera et al., 2009;

Hagemeister & Rosenblatt, 1997; Lohan & Murphy 2005-2006; Meert et al., 2005).

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Parents may also rely on alcohol or drugs to relieve their grief (Laakso & Ilmonen, 2001;

Vance et al., 2002).

The cause of the infant’s/child’s death by sudden or expected illness and the

negative feelings associated with the death may affect bereaved parents’ mental health

status. Bereaved parents whose infant/child had died suddenly or violently often

experience severe psychological distress including more episodes of depression and

physical complaints (Dyregrov et al., 2003; Murphy et al., 2003; Seguin et al., 1995).

Bereaved parents whose only child died appeared to have more difficulty in adjusting to

the death and experience higher incidence of complicated grief reactions than bereaved

parents with surviving children (Dyregrov et al., 2003; Barrera et. al., 2007).

The grief reactions associated with the death of a child also may (or often) affect

the spouse/partner relationship. Communication was identified as a critical component in

helping bereaved couples cope with their grief. It was often assumed that the stress

associated with losing a child increases the risk of bereaved couple’s separating or

divorcing. However, research identifies this event as multifactoral and has found other

factors that may disrupt bereaved parents’ marriages. These include poor communication,

especially shortly after the infant’s/child’s death and not feeling supported by their

partner especially if one partner blames the other for the death. Having a close supportive

relationship and being able to share their feelings shortly after the death of the

infant/child were some of the factors that were helpful in minimizing marital discord

(Armentrout, 2009; Kamm & Vandenburg, 2001; Lang et al., 1996). However, as most of

the studies of bereaved parents’ grief reaction were conducted more than 14 years ago,

current research is also needed to determine if these older findings hold true, as gender

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roles have changed; fathers have become more involved in child care and couples appear

to be more open in the expression of their feelings.

Stressful events or life crises have the potential to challenge a person’s sense of

identity. Depending on the circumstances surrounding the infant’s or child’s death,

parental grief can be viewed as a positive experience with personal growth. (Amentrout,

2007; Brosig et al., 2007; Laakso & Paunonen-Ilmonen, 2001). Their perspectives and

values on life also change and this period is described as a transition in the lives of

bereaved parents. Parents emerge from their grief experience transformed into a new role.

This includes participation in events such as walkathons to support the diagnosis that

caused the death of their child, setting up foundations to provide monetary support that

benefits others and also to remember their deceased child, facilitating bereaved parents

support groups, and ministering to other bereaved families (Amentrout, 2007; Klass,

1997; Laakso & Paunonen-Ilmonen, 2001; Meert et al., 2005; Woodgate, 2006).

Studies have shown that spirituality plays an important role in coping with stress.

Religious and spiritual coping strategies are resources that can be used effectively in

times of crisis or stressful daily life events to reduce the physical and psychological

symptoms that the stressor creates in the individual. Spiritual coping strategies are also

useful in buffering the effects of the stressful event by instilling hope, providing comfort

and strength, and bringing meaning and purpose to the crisis event. As evident in the

research studies, spiritual beliefs and practices are used by individuals to mitigate the

effect of stress on their mental health by reducing anxiety and symptoms of depression,

increasing their self-esteem, providing purpose and meaning to their lives and instilling

hope.

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Recognizing the emotional needs of parents during this period of crisis in their

lives was found important in many research studies, with spirituality being identified as

an important coping strategy. For many parents, spirituality assisted them in relieving

their emotional pain and gave meaning to their child’s death. However there are several

limitations with the research studies that have explored spirituality as a coping strategy

for bereaved parents. The majority of participants have been Caucasian, college educated

and of the Christian faith, leaving a gap in knowledge about parents from other

racial/ethnic groups or other religions. Differences in using spirituality as a coping

strategy based on the participant’s socio-economic status were rarely addressed. Current

studies that examine differences in gender use of spirituality to cope with

traumatic/stressful life events are needed.

Issues and gaps in the research

There are very few studies on the use of spirituality as a coping strategy by

bereaved parents, gender differences and grief across racial/ethnic groups for deaths that

have occurred in the neonatal and pediatric intensive care units. Many of the grief studies

are qualitative that provide valuable insight into parents’ emotions following the loss of a

child but the quantitative, longitudinal studies that examine parental grief over time are

lacking. Bereaved parents have identified spirituality as being very important in coping

with their grief but there is very limited systematic study on the use of spirituality as a

coping strategy in the grieving process especially over time. Anderson, Marwit, and

Vandenberg (2005) identified the need for more studies that compare religious coping

among bereaved parents.

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The concept of spirituality has posed numerous obstacles as to its definition and

meaning. Description of spirituality in the literature includes interconnectedness to self,

others, and the environment (Burkhardt, 1989), and making meaning of one’s situation

that transcends the self towards empowerment (Reed, 1991). McSherry and Cash (2004)

suggested that clarification of spirituality within a theoretical framework could lend

greater clarification to spirituality versus the traditional approach to defining spirituality

through concept analysis. Hill, et al. (2000) suggests that individualized spirituality is a

personal journey which is consciously undertaken by the individual to find what or who

is sacred to them. Description of the sacred includes a divine being, object or principle

that has the ability to evoke a personal transformation.

Difficulties have arisen in understanding the meaning of spirituality and

religiosity (Burkhardt & Nagi-Jacobson, 1989; Hill et al., 2000; McSherry & Cash, 2004;

Peri, 1995). This may have occurred because the earlier definition of spirituality was

rooted in the Judeo-Christian religion and systems of faith (Schneiders, 2003). The newer

understanding of spirituality has emerged from the phenomenologic qualitative studies

that have identified spirituality as having a sense of meaning and purpose, and a

connectedness with the environment (McSherry & Cash, 2004). McSherry, Cash, and

Ross (2004) have suggested that individuals will utilize their values and world-views to

create their own interpretation and understanding of spirituality.

The difficulty surrounding the definition of spirituality is related to the

interpretation of the concept. The literature emphasizes the difficulty in creating a world-

view of spirituality is directly related to individualized interpretation, the elusiveness in

the terminology such as transcendence, and the difficulty, for many, in separating

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spirituality from religious practices. The definition of spirituality could remain elusive

because the defining characteristics of the term may not be transferable or universally

recognized (Cash & McSherry, 2004).

Hill et al., (2000) describe individuals whose spirituality is separate from religion

as less likely to hold Christian beliefs, attend church or pray. They are often individuals

who are engaged in group experiences that involve personal growth, believe in a

connection with the force of the universe, hold non-traditional new-age beliefs or claim to

have had a mystical experience. However, what is considered vital to both spirituality and

religion is a sense/search of the sacred, as identified by the individual and is held in

respect, reverence and devotion.

Berry (2005) in critiquing several research studies on religion and health found

that the difficulty in defining spirituality and the variety of definitions among authors

makes it difficult to conceptualize and operationalize spirituality/religion. The

instruments used to measure the complex concept of religion/spirituality are often limited

in the questions being asked and this makes it difficult to interpret the results of a highly

complex construct measured with an oversimplified tool.

It will always be difficult to use empirical data to support spirituality and or

religious studies because both these concepts are highly individualized and deal with

human emotions. The qualitative studies provide a clearer interpretation of the meaning

of spirituality and religiosity as it describes the lived experiences of each person. The

results from the qualitative studies suggest that the definition of spirituality is

individualized and therefore a common definition may not be attainable.

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Gaps in the study of spiritual coping strategies and bereaved parents were clearly

identified. All the studies that examined spirituality as a coping strategy have focused on

religious coping and neglected the non-religious spiritual strategies. The use of

spirituality as a coping strategy by bereaved parents and its impact on their psychological

adjustment was not identified. This study will begin to address those gaps.

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CHAPTER III

METHODS

This study builds on a longitudinal study being conducted by Dr. JoAnne

Youngblut and Dr. Dorothy Brooten by testing the relationships between bereaved

parents’ use of spiritual coping strategies and parent grief, personal growth and mental

health, and identifying differences in the use of spiritual coping strategies among

racial/ethnic and religious groups for mother/ father dyads and across time at one and

three months post death. Data on parent coping strategies (spirituality), grief (despair,

detachment, and disorganization), mental health (depression and post-traumatic stress

disorder), and personal growth were collected at one and three months post-death of an

infant/child in the neonatal intensive care unit/pediatric intensive care unit.

Abstract of larger study

The parent study entitled, “Death in the NICU/PICU: Parent and Family

Functioning,” is a longitudinal repeated measures design study that uses both quantitative

and qualitative data collection methods and analysis. Quantitative data were collected at 1

month (T1), 3 months (T2), 6 months (T3), and 13 months (T4) after the death of the

infant/child. Data on parent supportive resources (religiosity, social support), parent grief

(despair, detachment, disorganization), parent mental health (depression, PTSD),

personal growth, and family functioning (mother-father couple relationship, parent-

surviving child relationship, and family functioning) were collected at all time points.

Data on characteristics of the situation surrounding the infant’s/child’s death were

collected only at T1. Full parent demographic data were obtained at T1; demographic

data that could change were collected at each time point. Infant/child hospital record data

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were collected after the T1 interview. Data were collected from both parents whenever

possible. The Hogan Grief Reaction Checklist (HGRC), Beck Depression Inventory

(BDI-II), Impact of Event Scale-Revised (IES-R), Inventory of Social Support (ISS), the

Multidimensional Scale of Perceived Social Support (MSPSS), Family Adaptability and

Cohesion Evaluation Scale (FACES II), Parenting Stress Index (PSI) and Dyadic

Adjustment Scale (DAS) were used to collect the quantitative data. Interviews were

conducted in the language (Spanish or English) selected by the parent with bilingual data

collectors.

Setting and Sample

Mothers (n = 176) and fathers (n = 73) whose infant or child died in the

NICU/PICU at Broward General Medical Center (BGMH), Miami Children’s Hospital

(MCH), Jackson Memorial Hospital/University of Miami Medical Center (JMH/UMMC)

and Joe Di Maggio Children’s Hospital (JDCH) participated in the study. The four

NICUs are level III referral facilities that care for extremely low birth weight infants and

those infants requiring surgical procedures. The four PICUs are trauma and referral

centers. Both JMH/UMMC and MCH are organ transplant centers. Parents were also

recruited through state death records obtained from the Office of Vital Statistics, Florida

Department of Health.

Inclusion criteria

For parents to be included in the study, their deceased newborns had to have been

from a singleton pregnancy, born alive and lived for more than 2 hours in the NICU.

Infants/ children who died in the PICU had to have been 18 years old or younger and a

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patient in the PICU for at least 2 hours. All parents understood spoken English or

Spanish. Parents who could not read English or Spanish had the questions read to them.

Exclusion criteria

Exclusion criteria included multiple gestation pregnancy if the deceased was a

newborn, a child who was in a foster home before being hospitalized and/or whose

injuries were suspected to be due to child abuse to eliminate extreme family conditions,

and death of a parent in the illness/injury event, such as a motor vehicle crashes, because

the surviving parent would be dealing with the death of a spouse and a child

simultaneously. Families were not excluded based on race/ethnicity.

Dissertation

Sample

The convenience sample consists of 119 families, 67 with an infant who died in

the NICU and 52 with a child who died in the PICU, from the larger study. No additional

inclusion/exclusion criteria beyond those in the parent grant were necessary for this

study.

Procedure

This study was approved with the larger study by the Institutional Review Board

(IRB) at Florida International University and all recruitment facilities prior to recruitment

of study participants. Eligible families were identified by the clinical co-investigators of

each unit. The project director (PD) called these co-investigators each week to see

whether there were any deaths in their units during the past week. The PD sent a letter to

each family (Spanish on one side, English on the other) describing the study. At 3 to 4

weeks post-death, a research assistant (RA) called the family, screened for inclusion and

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exclusion criteria, described the study to them further with a verbatim script provided in

both Spanish and English, answered any questions they had, obtained their verbal consent

to participate and scheduled the T1 interview. All interviews were conducted in the

family’s home or another place of their choosing at a time that was convenient for them.

Parents were told that the purpose of the study was to learn about the experience

of losing an infant or child in the intensive care unit and the effects it might have for the

parent and the family during the first year after the infant’s or child’s death. They were

told that there would be four interviews – at 1, 3, 6, and 13 months after the infant’s or

child’s death and that these would take about 1.5 hours each. Only the data from 1 month

(T1) and 3 months (T2) were used in this study.

Most of the RAs were bilingual and fluent in Spanish and English. They asked

each parent to indicate which language they preferred for the questionnaires and the

qualitative interview. At the T1 home visit, and before the interview, the RA reminded

the parent(s) about the study using the text from the letter, answered any questions, and

obtained written consent from the parent(s) in their preferred language for their own

participation and for abstraction of data from the infant’s or child’s chart. At T1 and T2,

parents completed the family demographic data form together in interview format. Each

parent also completed the individual demographic data form, HGRC, BDI-II, IES-R, and

the SCS among others separately. Each parent received a $25 gift card for a major

department store for each of the completed interviews, for a possible total of $200 for

families where both parents participated in all four quantitative interviews.

Research assistants were trained to look for signs that the parent was in need of

immediate psychological attention and to respond by obtaining help for the parent before

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they left the family’s home. The RAs had a list of mental health providers for Miami-

Dade and Broward counties (and other counties when needed) that they could contact to

obtain help. In addition, at T1 all parents were provided with a list of resources that could

help them with their grief. At each team meeting, bereaved parents’ responses on the

BDI-II and the IES-R were reviewed and the RA’s impression of the parents was

discussed. Parents who were identified as being at risk were encouraged to seek

psychological assistance.

The need for confidentiality during data collection, coding, and entry was stressed

to all project personnel during the initial training session and was reviewed periodically

throughout the study. All of the investigators and study personnel completed the required

human subjects research training.

Dependent Variables Measures

Hogan Grief Reaction Checklist (HGRC) was used to measure the bereaved

parents’ grief. The 61-item HGRC contains 6 subscales: Despair (13 items), Detachment

(8 items), Disorganization (18 items), Panic Behavior (14 items), Blame and Anger (7

items), and Personal Growth (11 items). Although parents responded to all 61 items, the

Despair, Detachment and Disorganization subscales were used in the analysis.

Respondents rated each item on a 5-point Likert scale ranging from 1 “Does not describe

me at all” to 5 “Describes me very well” with higher scores indicating higher grief

symptoms over the past two weeks (Hogan, Greenfield, & Schmidt, 2001).

Hogan, et al. (2001) developed the items on the HGRC from the content analysis

of a qualitative study with a sample of bereaved adults. Confirmatory factor analysis and

correlations between the HGRC subscales and subscale scores on the Texas Revised

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Inventory of Grief, the Impact of Event Scale, and the Grief Inventory scale supported its

construct validity (Hogan, et al., 2001).

Hogan et al. (2001) reported Cronbach’s alpha coefficient for the 3 subscales used

in the current study as: Despair = .89, Detachment = .87, and Disorganization = .84.

Hogan, et al.’s four week test-retest reliability of the HGRC revealed strong cross-time

correlations on these 3 subscales: Despair, r = .84; Detachment, r = .77; and

Disorganization, r = .85 supporting the stability reliability of the subscales. Cronbach’s

alphas in this study were: Despair = .92 and .93; Detachment = .87 and .89; and

Disorganization = .84 and .86 for mothers at T1 and T2, respectively; and Despair = .89

and .88; Detachment = .79 and .85; and Disorganization .79 and .87 for fathers at T1 and

T2, respectively.

Personal Growth was measured with the HGRC personal growth subscale

described by Hogan et al. (2001) as becoming more caring, understanding and optimistic.

Hogan et al. (2001) reported a Cronbach’s alpha coefficient of .82 and a test-retest

correlation of .81.The Cronbach’s alpha in this study was: .77 at T1 and .88 at T2 for

mothers and .83 at T1 and .89 at T2 for fathers.

Depression was measured using the Beck Depression Inventory (BDI-II)

developed and revised by Beck, Steer and Brown (1996). Respondents rated each of the

21 items on a scale from 0 to 3 with higher scores indicating greater severity of

depressive symptoms. Beck, et al. (1996) reported an internal consistency reliability of

.92 for outpatient adults with psychiatric disorders and .93 for college students. The one

week test-retest reliability of the BDI-II for outpatient adults yielded a correlation of .93

demonstrating strong stability of the scale from one testing time to another.

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The BDI-II has been used extensively with diverse populations exhibiting

different types of diagnoses. In a study by Arnau, Meagher, Norris, and Bramson (2001),

internal consistency reliability of the scale was .94 in a sample of 340 medical patients,

predominately White (69.4%), who attended a primary health care clinic. A strong

correlation of .65 was found between the mental health subscale of the Health and

Functioning Perception scale and the BDI-II which supported its construct validity.

Similar findings were reported by Penley, Wiebe, and Nwosu (2003) who

evaluated the Spanish version of the BDI-II with 122 Mexican American patients

undergoing hemodialysis treatment. Internal consistency reliability was .92. A subsample

of 23 bilingual patients completed both the English and Spanish BDI-II. Their English

and Spanish scores were strongly correlated, r = .70. Gary and Yarandi (2004) reported a

strong internal consistency reliability of .91on the BDI-II in a sample of 206 southern

rural African-American women. Internal consistency in this study was .90 at T1 and .93

at T2 for mothers and .90 at T1 and .89 at T2 for fathers.

Post-Traumatic Stress Disorder was measured with the Impact of Events Scale-

Revised (IES-R). The 22-item IES-R contains 3 subscales: Intrusive thoughts (where the

individual re-experiences the trauma), Avoidance (reminder of the trauma), and

Hyperarousal (persistent increased arousal). Respondents rated each item on a scale from

0 “not at all” to 4 “extremely” to indicate how distressing each item had been for them

during the past two weeks with respect to the death of their infant/child.

The IES-R has been used widely in diverse populations who have experienced a

variety of traumatic life events. Beck et al. (2008), in a sample of 182 individuals

following a motor vehicle crash, reported internal consistency reliabilities of .95 for the

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total scale and .90 for Intrusion; .86 for Avoidance and .85 for Hyperarousal subscales.

Confirmatory factor analysis of the IES-R supported the fit of the three factor model.

Beck, et al. (2008) reported that the IES-R subscales were highly correlated with the

similar subscales of the original IES scale, with the Post-Traumatic Stress Disorder

Symptom Scale-Self Report and the State Trait Anxiety Inventory supporting the revised

version’s construct validity. Internal consistencies in this study for mothers were .90 and

.91 for the total scale; .86 and .86 Intrusion; .79 and .76 Avoidance, and .76 and .83

Hyperarousal at T1 and T2, respectively. Internal consistencies for Fathers were: .91 and

.89 for the total scale; .80 and .79 Intrusion; .82 and .80 Avoidance, and .71 and .73

Hyperarousal at T1 and T2, respectively.

Independent Variable Measures

Spiritual Coping was measured using the Spiritual Coping Strategies (SCS) scale

(Baldacchino & Buhagiar, 2003). The 20-item instrument contains two subscales:

Religious coping strategies (9 items) and Spiritual coping strategies (11 items).

Respondents rated each item on a 4-point scale ranging from 0 “never used” to 3 “used

often” with higher scores indicating greater use of spiritual and religious coping

strategies. Baldacchino and Buhagiar reported Cronbach’s alphas of .82 for the religious

coping strategies subscale and .74 for the spiritual coping strategies subscale and test-

retest reliability of r = .47 after a 3 week interval. They also reported correlations of .40

between the spiritual coping strategies scale with the well-established Spiritual Well

Being instrument, supporting construct validity of the SCS and the subscales.

Hawthorne, Youngblut, and Brooten (2011) conducted a pilot study to evaluate

the psychometric properties of the newly translated Spanish version of the SCS scale. A

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convenience sample of 50 bilingual adults who had experienced a stressful event

completed the English and Spanish version of the SCS; 25 of these bilingual adults

completed the English and Spanish versions of the SCS again 2 weeks later for test-retest

reliability. Internal consistency reliabilities were .75 for the religious coping strategies

subscale and .80 for the spiritual coping strategies subscale. The test-retest reliability was

r =.84 for the English religious coping strategies subscale and r = .61 for the Spanish

religious subscale. For the English spiritual coping strategies subscale r = .78 and .77 for

the Spanish spiritual coping strategies subscale, demonstrating stability of the subscale

across time. Internal consistencies in this study were: .88 (both T1 and T2) for religious

coping and .80 (T1) and .82 (T2) for spiritual coping for mothers and .90 (T1) and .87

(T2) for religious coping and .80 (both T1and T2) for fathers

Race/Ethnicity was categorized as “White, non-Hispanic,” “Black non-

Hispanic,” or “Hispanic/Latino(a)” based on parent self-identified race (White, Black,

Asian, Native American) and Ethnicity (Hispanic-yes/no).

Religion indicated by the parent was categorized as Protestant, Catholic, None

(Atheists, Agnostics) and Other (Jewish, Buddhist, Muslim, Santeria/Espiritismo,

Mormon and Rastafarian).

Demographic information

Family demographics collected at one month (T1) included the number of parents

living in the home, marital status, years living together, annual family income, number

and ages of surviving children in the family and age of the deceased infant or child at

death. Individual parent demographics included the parent’s age, race/ethnicity,

education, employment status, and occupation. Data about the infant’s or child’s

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hospitalization and medical history were collected from the hospital record. Age of the

infant or child at death was obtained from the parents and converted to months. Marital

status was dichotomized as “partnered” (parent is married or living with adult intimate

partner) or not partnered.

Data Management and Analysis

One set of instruments was used for each participant (mother, father) and time

point (one month and three months post-death). All form pages were labeled with the

family’s unique identification code and the time points. The RAs maintained a checklist

of necessary forms to verify packet completeness before administering the

questionnaires. The RAs reviewed all forms for completeness before ending the interview

session. Data files were identified by numbers only. A master log book included the

assigned family identification code, dates and times each family was contacted, date and

time each interview was completed and by whom.

Strategies for maintaining data integrity during coding and entering included

measures to assure accuracy of the database. Data packets had two levels of coding. First-

level coding by the Principal Investigator (PI) of this study or a RA consisted of placing

missing codes where respondents chose not to respond and assign numbers to responses

for open-ended items. Second-level coding by the PD, the PI of this study or a RA

occurred at the time of data entry and served to increase the accuracy in decisions made

during first-level coding. All decisions made during coding were recorded in the

codebook for consistency in decision-making. The codebook was updated frequently.

Data were entered into Statistical Package for Social Sciences (SPSS) separately by two

different RAs. Means and standard deviations were run for each variable in both data

94

entry file and compared to identify entry errors. All discrepancies identified were

resolved by referring to the raw data and the codebook.

95

CHAPTER IV

RESULTS

This research included 167 bereaved parents of 119 deceased infants/children who

participated in the larger longitudinal study conducted by Drs. Youngblut and Brooten.

The purpose of the research was to: 1) describe differences in bereaved parents’ use of

spiritual coping strategies across racial/ethnic and religious groups, mother/father dyads

and time at one and three months after the infant’s or child’s death in the neonatal

intensive care unit (NICU) or pediatric intensive care unit (PICU) and 2) test the

relationship between spiritual coping strategies and grief, mental health, and personal

growth for mothers and fathers at one and three months post death. Parents of children

who died in the NICU or PICU at one of the four level III tertiary hospitals were

recruited. Data collected in families’ homes were demographic information and responses

to questionnaires (HGRC, BDI-II, IES-R and SCS). This chapter presents the sample

characteristics and quantitative findings for each research question.

Description of the sample

The 167 bereaved parents included 116 mothers and 51 fathers (30 couples). The

mothers’ ages ranged from 18-50 years and fathers’ ages ranged from 17-58 years. The

majority of mothers were Black non-Hispanic and fathers, Hispanic. Most mothers and

fathers were married or living with a partner, had graduated from high school were

employed and were of the lower to middle income socio-economic status. More fathers

held college degrees. More mothers than fathers rated religion as being very important to

them but more fathers than mothers reported spirituality as being very important. Most

reported Protestant as their religious affiliation (table 1).

96

Table 1

Description of parents

Characteristic Mothers

(n = 116)

Fathers

(n = 51)

Age [M (SD)] 31.1 (7.73) 36.8 (9.32)

Race/ethnicity [n (%)] White

Black

Hispanic

22 (19%)

51 (44%)

43 (37%)

14 (28%)

16 (31%)

21 (41%)

Education [n (%)]

< High school

High school graduate

Some college

College degree

13 (11%)

42 (36%)

26 (23%)

35 (30%)

7 (14%)

13 (25%)

12 (24%)

19 (37%)

Partnered? [n (%)] Yes 85 (73%) 43 (84%)

Employed? [n (%)] Yes 42 (47%) 32 (78%)

Religion [n (%)] Protestant

Catholic

Jewish

Mormon

Santeria

Rastafarian

None

51(57%

24 (27%)

4 (4.5)

1 (1%)

1 (1%)

0 (0%)

8 (9%)

23 (56%)

7 (17%)

1 (2%)

1 (2%)

0 (0%)

1 (2%)

8 (21%)

Importance of [M (SD)] 7.85 (3.00) 7.28 (3.39)

97

Characteristic Mothers

(n = 116)

Fathers

(n = 51)

Religion

Importance of

Spirituality

[M (SD)] 7.21 (3.09) 7.90 (2.59)

More infants/children in the sample died in the NICU than the PICU. Most of the

deaths were males and both groups had stayed in the NICU/PICU for approximately one

month. Admission diagnosis included prematurity, congenital anomalies, respiratory

disease, sepsis and neurological conditions. Mothers were initially interviewed at a mean

of 7.7 weeks (SD = 3.5) and fathers, 7.2 weeks (SD = 2.98) after the death of their

child/infant. The second interview was conducted at an average of 10.8 weeks (SD =

4.90) for mothers and 12.9 weeks (SD = 1.72) for fathers.

98

Table 2

Description of deceased child and family

Characteristic NICU

(n = 67)

PICU

(n = 52)

Statistic

Child’s age in months [M (SD)] 3.9 (14.13) 67.5 (68.02) t = 6.20**

Child’s sex [n (%)]

Female

Male

27(38.6%)

43 (61.4%)

28 (50.0%)

28 (50.0%)

X2 = 1.65

Admission Diagnosis [n (%)]

Neurologic conditions

Prematurity

Respiratory conditions

Congenital anomalies

Sepsis

2 (1.6%)

25 (20.5%)

17 (14.0%)

11 (8.9%)

4 (3.2%)

8 (6.4%)

0 (0%)

7(5.7%)

5 (4.0%)

12 (9.7%)

X2 =94.80**

Days in ICU before death [M (SD)] 32.7 (46.55) 28.9 (77.75) t = 5.50**

Family Income [n (%)]

< $3,000

$3,000 – 29,999

$30,000 – 49,999

> $50,000

4 (4.3%)

19 (20.4%)

13 (14.0%)

18 (19.4%)

0 (0.0%)

14 (15%)

9 (9.7%)

16 (17.2%)

X2 = 3.27

* p<.05 ** p<.01

99

Differences in the use of Spiritual Coping Strategies

Research Question 1: Are there differences in the use of spiritual coping strategies

across racial/ethnic groups, religion groups, mother/father dyads and time at 1 and 3

months post-death?

Hypothesis 1. There will be differences in use of the SCS for each of the specified

comparisons.

One-way ANOVAs with Scheffe tests for post-hoc comparisons were used to test

differences in means by racial/ethnic and religion groups on use of religious and spiritual

coping strategies at T1 and T2 for bereaved mothers and fathers. For bereaved mothers at

T1, racial/ethnic group differences in use of religious and spiritual coping strategies were

not statistically significant. Scheffe Post-Hoc tests at T2 showed that White non-Hispanic

mothers used significantly less religious coping strategies than Black non- Hispanic

mothers.

Significant differences in the use of religious coping strategies but not spiritual

coping strategies were found at T1 and T2 by religion group. Scheffe Post-Hoc tests

showed that Protestant mothers’ use of religious coping strategies was significantly

higher than mothers in the no religion and other groups. Catholic mothers’ use of

religious coping strategies also was higher than mothers in the no religion group (table 3).

100

Table 3

Differences in mothers’ use of spiritual coping strategies by race/ethnicity and religion

1 Month Post-death 3 Months Post-death

Mothers’ Groups Religious

Coping

Strategies

M (SD)

Spiritual

Coping

Strategies

M (SD)

Religious

Coping

Strategies

M (SD)

Spiritual

Coping

Strategies

M (SD)

Racial/ethnic group

Black non-Hispanic (n = 37)

White non-Hispanic (n = 16 )

Hispanic (n = 36 )

F = 2.84

18.7 (4.90)

13.1 (8.01)

16.1 (10.23)

F =.42

25 (5.91)

23.4 (4.86)

24.2 (6.34)

F = 5.09**

18.1 (5.23)

12.5 (7.84)

15.9 (7.73)

F = .42

23.8 (6.0)

23.1 (5.90)

23.7 (6.24)

Religion group

Protestant (n = 47)

Catholic (n = 21)

Other1 (n = 6)

None (n = 8)

F = 13.44**

19.8 (6.82)a

15.4 (7.07)b

11.0 (8.29)a

4.8 (4.53)ab

F =1.19

25.3 (5.86)

23.0 (6.14)

23.8 (4.79)

22.14 (6.09)

F =16.76**

18.5 (4.98)a

16.5 (6.71)b

10 (8.58)a

4.1 (4.67)ab

F = .96

24.5 (6.40)

23.0 (5.90)

24.7 (4.68)

20.8 (7.44)

1Other includes 4 Jewish, 1 Mormon, 1 Santeria

* p<.05 ** p<.01 Means with the same letters indicate statistically different groups.

Significant group differences in the use of spiritual coping strategies were found

at T1, with Protestant fathers scoring higher than those in the other religion groups.

Protestant and Catholic fathers’ use of religious coping strategies was significantly higher

than fathers in the no religion group at T1. At T2, differences in fathers’ use of religious,

but not spiritual, coping strategies was statistically significant, with Protestant fathers

101

scoring higher than those in the no religion group. Differences in fathers’ use of religious

and spiritual coping strategies by racial/ethnic groups was not significant (table 4)

Table 4

Differences in fathers’ use of spiritual coping strategies by race/ethnicity and religion

1 Month Post-death 3 Months Post-death

Fathers’ Groups Religious

Coping

Strategies

M (SD)

Spiritual

Coping

Strategies

M (SD)

Religious

Coping

Strategies

M (SD)

Spiritual

Coping

Strategies

M (SD)

Racial/ethnic group

Black non-Hispanic (n = 12)

White non-Hispanic (n = 12)

Hispanic (n = 17)

F = 1.91

14.4 (7.05)

12.1 (8.07)

17.3 (6.55)

F =.75

22.8 (6.81)

22.4 (6.75)

25.0 (5.30)

F =.32

14.6 (6.72)

12.5 (8.02)

13.8 (6.76)

F = 1.09

21.8 (6.78)

23.9 (5.25)

24.8 (5.85)

Religion group

Protestant (n = 23)

Catholic (n = 7)

Other1 (n = 3)

None (n = 8)

F = 6.35*

17.57 (5.88)a

16.6 (7.66)b

12.7 (6.11)

6.8 (5.70)ab

F = 3.34*

25 (5.83)a

24.7 (5.47)

14.3 (4.04)a

22.3 (5.80)

F = 4.46*

16.0 (6.03)a

9.0 (4.64)

13.5 (9.19)

8.3 (5.26)a

F = 1.57

24.6 (6.54)

21.2 (6.08)

17.7 (3.51)

22.1 (4.79)

1Other for fathers includes 1 Jewish, 1 Mormon, 1 Rastafarian

* p<.05 ** p<.01 Means with the same letters indicate statistically different groups.

Paired samples t-tests were conducted to evaluate differences between mothers

and fathers religious and spiritual subscale scores at T1 and T2. Significant differences

were found between bereaved mothers’ and fathers’ religious, but not spiritual, coping

102

strategies scores at T1 and T2 with mothers having higher scores than fathers. At T2

differences between mothers and fathers spiritual coping strategies scores were also

significant. There were no significant differences across time (T1 to T2) in the use of

religious and spiritual coping strategies for mothers and fathers (table 5).

Research Question 2. What is the relationship between spiritual coping strategies

and grief, personal growth, and mental health for mothers and fathers at 1 and 3 months

post-death?

Hypothesis 2. Parent grief, personal growth, depression, and PTSD will be

related to their scores on the SCS at each time point.

Pearson product-moment correlations were used to determine the relationships

between the use of SCS subscales and grief (despair, detachment, disorganization),

mental health (depression, PTSD) and personal growth for bereaved mothers and fathers

at T1 and T2. Mothers’ higher use of religious coping strategies was significantly related

to higher personal growth and lower intrusive thoughts at T1 and to higher personal

growth at T2. Mothers’ higher use of spiritual coping strategies was significantly

associated with lower levels of despair, detachment, depression, intrusive thoughts, and

hyperarousal, and higher levels of personal growth at T1 and T2. At T2, mothers’ higher

use of spiritual coping strategies was significantly associated with lower total PTSD

scores (table 6).

103

Table 5

Mother-father and cross time differences in use of spiritual coping strategies

1 Month

Post-death

M (SD)

3 Months

Post-death

M (SD)

Paired t

value

Mothers (n = 81)

Religious Coping Strategies

Spiritual Coping Strategies

16.5 (8.42)

24.2 (6.13)

15.9 (7.28)

23.9 (6.35)

t = .97

t = .68

Fathers (n = 36)

Religious Coping Strategies

Spiritual Coping Strategies

14.2 (7.0)

23.2 (6.17)

13.1 (6.68)

22.9 (6.16)

t = 1.35

t = .39

Mothers

(n = 30)

Fathers

(n = 30)

1 Month Post-Death

Religious Coping Strategies [M(SD)]

Spiritual Coping Strategies [M (SD)]

15.9 (7.87)

24.2 (5.30)

13.8 (7.69)

22.8 (5.91)

t = 2.08*

t = 1.21

3 Months Post-Death

Religious Coping Strategies [M (SD)]

Spiritual Coping Strategies [M (SD)]

15.8 (7.96)

24.6 (6.47)

12.9 (6.75)

22.5 (5.97)

t = 3.28*

t = 2.16*

* p<.05 ** p<.01

104

Table 6

Correlations of mothers’ use of spiritual coping strategies with grief, personal growth

and mental health at 1 and 3 months after the infant’s/child’s death

1 Month Post-death 3 Months Post-death

Religious

Coping

Strategies

r

Spiritual

Coping

Strategies

r

Religious

Coping

Strategies

r

Spiritual

Coping

Strategies

r

Grief Despair -.18 -.53** -.11 -.51**

Grief Detachment -.19 -.55** -.09 -.53**

Grief Disorganization -.01 -.38** .02 -.55**

Personal Growth .41** .51** .37** .64**

PTSD Intrusive Thoughts -.22* -.35** -.08 -.32**

PTSD Avoidance .03 -.11 -.08 -.19

PTSD Hyperarousal -.04 -.31** -.06 -.39**

PTSD Total Score -.10 -.30** -.08 -.35**

Depression -.19 -.54** -.14 -.55**

* p<.05 ** p<.01

Significant correlations between bereaved fathers’ SCS and grief, personal

growth, PTSD, and depression showed different patterns at T1 and T2. At T1, fathers’

higher use of religious coping strategies was related to lower grief (detachment, despair

and disorganization), intrusive thoughts, hyperarousal, and depression. However, at T2,

fathers’ higher use of religious coping strategies was related significantly only to personal

105

growth. Fathers’ higher use of spiritual coping strategies was related to lower grief

(detachment, despair, and disorganization), avoidance, hyperarousal, and depression at

both T1 and T2, and to lower intrusive thoughts at T1. Fathers’ higher use of spiritual

coping strategies also was significantly related to greater personal growth at both time

points (table 7).

Table 7

Correlations of fathers’ use of spiritual coping strategies with grief, personal growth

and mental health at one and three months after their infant’s/child’s death

1 Month Post-death 3 Months Post-death

Religious

Coping

Strategies

r

Spiritual

Coping

Strategies

r

Religious

Coping

Strategies

r

Spiritual

Coping

Strategies

r

Grief Despair -.32** -.47** -.15 -.29*

Grief Detachment -.26* -.61** -.10 -.35*

Grief Disorganization -.25* -.43** -.10 -.23*

Personal Growth .10 .51** .31** .49**

PTSD Intrusive Thoughts -.25* -.38* -.17 -.10

PTSD Avoidance -.02 -.27* -.13 -.29*

PTSD Hyperarousal -.23* -.32** -.06 -.27*

PTSD Total Score -.12 -.29* -.03 -.07

Depression -.27* -.46** -.01 -.39**

* p<.05 ** p<.01

106

RQ# 3: Do these relationships hold true when race/ethnicity and religion are controlled?

Hypothesis 3. Relationships between the SCS and parent grief, depression, PTSD

and personal growth will remain at each time point after controlling for race/ethnicity

and religion.

Hierarchical multiple regression analysis was used to test if the SCS subscales

(religious and spiritual coping strategies) significantly predicted levels of bereaved

mothers’ and fathers’ grief (despair, detachment, disorganization), mental health

(depression and PTSD) and personal growth at one and three months post death after

controlling for race and religion. Analyses were conducted for each of the dependent

variables (grief subscales [despair, detachment, disorganization], the BDI-II, IES-R, and

personal growth) for mothers and fathers separately at T1 and T2. In the first set of

regression analyses, race and religion were entered in block one as control variables and

religious coping strategies subscale was entered in block two as the independent variable.

In the second set of regression analyses, race and religion were entered in block one as

control variables and spiritual coping strategies subscale was entered in block two as the

independent variable.

Mothers’ higher use of spiritual coping strategies predicted significantly lower

symptoms of grief despair, detachment and disorganization at T1 and despair and

detachment at T2. Hispanic mothers had greater grief detachment at T2, and Protestant

mothers had higher disorganization at T1. However, their use of religious coping

strategies did not have a significant influence at T1 or T2 on their grief despair,

detachment and disorganization (table 8).

107

Table 8

Effects of mothers’ use of spiritual coping strategies on grief at 1 and 3 months after

their infant’s/child’s death

Grief

Despair

Grief

Detachment

Grief

Disorganization

1 Mo

β

3 Mo

β

1 Mo

β

3 Mo

β

1 Mo

β

3 Mo

β

Black non-Hispanic1 .13 .07 .16 .21 -.24 -.02

Hispanic1 .18 .17 .23 .32 .01 .13

Protestant Religion1 .24 .28 .44 .67 .43 .44

Catholic Religion1 .23 .23 .39 .52 .23 .27

Other Religion1 .02 .02 .12 .25 .14 .21

Religious Coping -.28 -.24 -.35 -.37 -.01 -.11

F

Adj R2

1.19

.01

.69

.02

1.84

-.007

1.8

-.06

.90

.06

.55

-.04

Black non-Hispanic1 .12 .03 .14 .15 -.23 -.04

Hispanic1 .10 .10 .18 .33** .04 .15

Protestant Religion1 .13 .21 .27 .47 .45** .42

Catholic Religion1 .01 .12 .21 .30 .19 .22

Other Religion1 .01 .06 .09 .26 .15 .24

Spiritual Coping -.55** -.53** -.58** -.59** -.41** -.29

F 6.29** 4.90** 7.34** 7.51** 3.69** .539

108

Grief

Despair

Grief

Detachment

Grief

Disorganization

1 Mo

β

3 Mo

β

1 Mo

β

3 Mo

β

1 Mo

β

3 Mo

β

Adj R2 .27 .23 .31 .33 .16 .04

1Scored yes = 1, no = 0. Suppressed groups are White non-Hispanic and no religion.

* p<.05 ** p<.01

Mothers’ use of spiritual coping strategies predicted significantly lower symptoms

of PTSD and depression and significantly higher personal growth at T1 and T2.

However, Hispanic mothers had significantly higher PTSD at T1. Mothers’ use of

religious coping strategies had a significant positive influence on personal growth at T1

and T2 but not on their level of depression or PTSD (table 9).

Fathers’ higher use of spiritual coping strategies predicted lower grief (despair,

detachment and disorganization) at T1 but not T2. Religious coping strategies was not a

significant predictor of bereaved fathers’ grief (despair, detachment, disorganization), or

personal growth at T1 or T2 (table 10).

Religious or spiritual coping strategies were not significant predictors of bereaved

fathers’ PTSD and depression, at T1 and T2 (table 11)

109

Table 9

Multiple regressions of mothers’ mental health and personal growth.

PTSD Depression Personal Growth

1 Mo

β

3 Mo

β

1 Mo

β

3 Mo

β

1 Mo

β

3 Mo

β

Black non-Hispanic1 .25 .28 .09 .20 .04 .04

Hispanic1 .34 .31 .16 .22 -.12 -.04

Protestant Religion1 .11 .15 .25 .41 .12 .10

Catholic Religion1 .04 .11 .21 .30 -.04 -.04

Other Religion1 .04 .02 .11 .13 -.08 .05

Religious Coping -.17 -.20 -.27 -.34 .34** .33**

F

Adj R2

1.18

.01

1.16

.01

.84

-.01

1.15

.01

4.17**

.18

2.53**

.10

Black non-Hispanic1 .25 .25 .09 .15 .04 .09

Hispanic1 .35** .33 .18 .24 -.12 -.07

Protestant Religion1 .04 .07 .15 .26 .30 .23

Catholic Religion1 -.05 -.02 .08 .11 .13 .14

Other Religion1 .03 .03 .10 .15 -.04 .02

Spiritual Coping -.33** .37** -.56** -.59** .46** .62**

F

Adj R2

2.62**

.10

2.90**

.13

5.86**

.26

6.61**

.30

7.65**

.32

10.74**

.43

1Scored yes = 1, no = 0. Suppressed groups are White non-Hispanic and no religion.

* p<.05 ** p<.01

110

Table 10

Multiple regressions of fathers’ grief and personal growth

Grief

Despair

Grief

Detachment

Grief

Disorganization

Personal

Growth

1 Mo

β

3Mo

β

1 Mo

β

3 Mo

β

1 Mo

β

3 Mo

β

1 Mo

β

3 Mo

β

Black non-Hispanic1 .01 .27 .07 .19 -.06 -.08 -.11 -.23

Hispanic1 .31 .29 .13 .13 .13 .06 -.03 -.22

Protestant Religion1 -.17 -.25 -.18 -.04 -.14 .04 -.18 .08

Catholic Religion1 -.15 -.06 -.09 .04 .15 .18 -.04 -.04

Other Religion1 -.06 .12 .08 .44 .08 .31 -.12 -.04

Religious Coping -.32 -.12 -.20 -.11 -.24 -.08 .02 .29

F

Adj R2

1.21

.03

.86

-.02

.67

-.05

1.35

.06

1.09

.01

.84

.03

.301

-.13

1.31

.05

Black non-Hispanic1 -.06 .19 -.03 .12 -.12 -.13 -.05 -.11

Hispanic1 .34 .35 .19 .18 .16 .01 .-09 .14

Protestant Religion1 -.23 -.27 -.15 -.02 -.17 .03 .09 .13

Catholic Religion1 -.19 -.13 -.12 -.01 .11 .14 .05 .04

Other Religion1 -.26 .02 -.21 .35 -.13 .24 .01 .12

Spiritual Coping -58** -.28 -.69** -.25 -.50** -.19 .54 .46

F

Adj R2

3.06*

.24

1.25

-.04

4.30**

.34

1.81

.11

2.45*

.18

1.06

.01

1.92

.13

2.23

.17

1Scored yes = 1, no = 0. * p<.05 ** p<.01

111

Table 11

Multiple regressions of fathers’ mental health

PTSD Depression

1 Mo

β

3 Mo

β

1 Mo

β

3 Mo

β

Black non-Hispanic1 -.09 .10 .02 .23

Hispanic1 .27 .16 -.20 -.16

Protestant Religion1 -.09 -.23 -.15 -.01

Catholic Religion1 -.13 -.10 .06 .06

Other Religion1 .04 .04 .02 .21

Religious Coping -.22 -.02 -.25 -.02

F

Adj R2

.57

-.07

.22

-.18

.69

-.62

.61

-.07

Black non-Hispanic1 -.13 .18 -.04 .14

Hispanic1 .30 .17 .23 -.09

Protestant Religion1 .05 -.23 -.18 .02

Catholic Religion1 -.16 -.11 .09 -.03

Other Religion1 -.14 .06 -.23 .10

Spiritual Coping -.42 -.06 -.54 -.33

F

Adj R2

1.28

.04

.24

-.17

2.00

.14

1.26

.04

1Scored yes = 1, no = 0. * p<.05 ** p<.01

112

CHAPTER V

DISCUSSION

In 2008 over 51,000 infants and children under the age of 18 died in the United

States (Matthews et al., 2011) resulting in parents having to cope with the devastating

death of their child. Children, according to Klass (1999), are perceived as an extension of

their parents and provide a new social value and status to the role of parenting; therefore,

the death of an infant/child profoundly affects bereaved parents emotionally and

physically as the death represents the loss of a future. Parents describe the death of their

infant/child as losing a part of themselves that they now have to learn to live without.

Spirituality is one of the coping strategies that bereaved parents may choose to use when

dealing with the death of their infant/child. Spirituality has the capability of acting as a

source of support to alleviate the stress, to help them adapt to the loss by reducing their

emotional and physical distress to heal their spirit, make sense of their experiences of

suffering and to move forward with their life (Glass, 2007; Mosely, 1997; Rozario,

1997).

This study investigated differences in bereaved mothers’ and fathers’ use of

spiritual coping strategies across race/ethnicity and religious groups at one month and

three months after the death of their infant/child. This study also examined the

relationship of spiritual coping strategies to grief, mental health and personal growth for

bereaved mothers and fathers at one and three months after the death. Additionally, the

relationship of religious and spiritual coping strategies to grief, mental health and

personal growth was further examined when race/ethnicity and religion were controlled.

113

The significant findings related to each research question as well as the strength and

limitations of the study will be discussed.

Discussion of Findings

One hundred and sixty-seven bereaved parents participated in the study. The

mothers’ average age was similar to fathers with a fairly equal representation across the

races of Black non-Hispanic and Hispanic mothers and fathers. There were less White

non-Hispanic fathers and mothers. The majority of mothers and fathers were partnered,

had some college education, and were of low to middle income. More fathers than

mothers were employed. The majority of mothers and fathers reported their religious

affiliation as Protestant. An equal number of mothers and fathers reported having no

religious affiliation.

RQ# 1) Are there differences in the use of spiritual coping strategies across

race/ethnic groups, religious groups, mother/father dyads and time at 1 and 3 months post

death? At one month (T1) use of religious and spiritual coping strategies for bereaved

mothers and fathers of different race/ethnicity was very similar. The conceptual model of

Hogan’s grief theory (1996) hypothesizes that during the early phase of grieving the

bereaved person experiences severe feelings of grief. It is possible that irrespective of

parent’s race and gender, at one month facing the reality of their infant’s/child’s death

and being engulfed in an overwhelming feeling of loss and suffering, bereaved parents

experience similar feelings of sadness, loneliness, and guilt. This finding would be

consistent with Hogan’s (1996) grief theory.

The few studies that have reported on bereaved African American women after

pregnancy loss have identified similar patterns of grieving to Caucasian women. Both

114

African-American and Caucasian bereaved mothers experience intense emotional

feelings following the loss of the infant and create memories through photographs,

memory boxes with their baby’s identification bracelets and clothes that the baby had

worn (Kavanaugh & Hershberger, 2005; Van & Meleis, 2002).

Black non-Hispanic mothers used more religious coping strategies at three months

(T2) after the death of their infant/child than White non-Hispanic mothers. It could be

that as the initial phase of intense grief begins to subside, more Blacks, who are

considered to be more religious than Whites (Laurie & Neimeyer, 2008; Levine, Yoo,

Aviv, Ewing, & Au, 2007), relied on religious rituals to cope with their grief. Laurie and

Neimeyer (2008) sampled bereaved college students and found African-Americans to

have a higher degree of religious belief, to use more religious and spiritual strategies and

less professional services for coping with their loss than Whites. Further, DiMarco,

Menke and McNamara (2001) found more bereaved White mothers attended and relied

on support groups to cope with their grief than Black mothers following the death of their

infant.

Differences were found for mothers and fathers who identified themselves as

Protestant or Catholic and those of other religion groups as well as those who do not

identify with any religious groups. This indicates that there are different religious coping

practices used by Christians than those used by other religious groups. Additionally,

parents who identified with the Christian faith, either Catholic or Protestant, used more

religious practices to cope with their loss and bereaved parents with other or no religious

affiliation relied on other coping strategies to deal with their loss.

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Schneider (2003) suggests that Christians, whose spirituality is synonymous with

their religion, have a strong belief in God related to the trinity (Father, Son and Holy

Ghost) while other religion groups also have a religious affiliation, but not with the

trinity. The non-religious groups do not identify with a personal God, choosing to have

spiritual traditions such as communing with nature and the universe (Schneider, 2003).

In comparison, significant differences were not found with bereaved mothers’ and

fathers’ use of spiritual coping strategies regardless of their religious affiliation. This

suggests a commonality among bereaved parents use of non-religious coping strategies to

cope with their loss irrespective of their religious affiliation. But Protestant and Catholic

fathers and fathers with no religious affiliation used different spiritual coping strategies at

T1 to cope with grief. For many people the concept of spirituality is synonymous with

religion and perhaps for these fathers religiosity was viewed as their spirituality.

Religious practices can include spirituality, but spirituality need not include a religious

practice (Peri, 1995; Schneider, 2003).

Examination of bereaved mothers’ and fathers’ use of religious and spiritual

coping strategies found that both mothers and fathers were consistent in their use of

spiritual coping strategies at one month and again at three months to deal with the death

of their child. There was higher use of religious coping by mothers than their spouse at

one month and three months and also higher use of spiritual coping at three months. This

demonstrated differences in coping styles between mothers and fathers. Research

findings that identified the differences in coping styles between bereaved mothers and

fathers found that fathers move through the grieving process faster and also begin to

move forward with their lives earlier by engaging in activities such as returning to work

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earlier than bereaved mothers after the death (Aho, et al, 2006; Armentrout, 2009).

Differences in the use of coping styles for bereaved fathers can also include alcohol

consumption. Vance et al. (2002) reported that fathers consumed more alcohol than

mothers to cope with their grief.

Unlike religious coping strategies, spiritual coping strategies were effective in

reducing mothers’ symptoms of grief and mental health but bereaved fathers used more

religious coping at one month. The use of the spiritual coping strategies was also

effective for mothers and fathers in managing their symptoms of depression and PTSD

(intrusive thoughts and hyperarousal) than the use of religious coping strategies.

Some of the non-religious strategies include maintaining relationship with

friends/family, confiding in them, appreciating the arts and using reflection to identify

their potential strengths (Schineider & Mannell, 2005). This suggests that bereaved

parents valued the social support received from family and friends. Meditation and

reflection, as stated by Schneider & Mannell (2006), are additional non-religious coping

strategies that provide comfort and peace and also relieve loneliness. Moreover, Klass,

(1999) described how bereaved parents can bring healing to their lives by using spiritual

coping strategies not connected to religion. This includes reflection through journaling,

meditation, reading inspirational writings, poetry, nature walks, listening to or creating

music, painting or sculpting, and therapeutic touch. These activities allowed bereaved

parents to connect with their inner-self to acknowledge their strength and ultimately find

peace (Laakso & Paunonen-Ilmonen, 2001).

Additionally, some research studies found that bereaved parents expressed

negative feelings such as anger at God for their infant/child’s death; some felt that God

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was punishing them and others questioned God their faith (Armentrout, 2009; Bellali &

Papadatou, 2006). Further, Meert, Thurston, and Briller (2005) found that 30 to 60% of

bereaved parents expressed anger and blame at themselves and God for their infant’s/

child’s death and this may result in using less religious coping strategies to cope with

early grief.

RQ #2) What is the relationship between spiritual coping strategies and grief,

personal growth, and mental health for mothers and fathers at 1 month and 3 months

post-death? Research studies have found that bereaved parents are more likely to

experience high rates of grief and mental distress following the death of their child

(Dyregrov et al., 2003; Kreicbergs et al., 2004; Murphy et al., 1999). In this study the

strong association between spiritual coping strategies and lower levels of grief and mental

health symptoms suggests that spiritual coping is a strong positive mediator in the

reduction of grief and mental health symptoms for bereaved parents.

Research studies with adults who were diagnosed with a life threatening illness

found that the use of spiritual coping strategies, which include having a secure

relationship with a higher power, having a belief that there is meaning to be found in life

after experiencing a traumatic event, and maintaining a connectedness with others

experienced less mood disorders of anxiety and depression, had less feelings of

hopelessness and greater functional and physical well-being (Boscalaglia, Clarke,

Jobling, & Quinn, 2005; Graham, Furr, Flowers, & Thomas-Burk, 2001; Levine & Targ,

2002).

Religious and spiritual coping also positively affected bereaved parents’ personal

growth at one month and three months. However the stronger relationship with spiritual

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coping strategies and personal growth suggests that bereaved parents used non-religious

strategies, for example, accepting and finding meaning and purpose in their infant’s/

child’s death and helping other bereaved families through the creation of websites and

foundations to positively influence the outcome of the tragic circumstances. The

conceptual model also states that as bereaved parents emerge from their grief their lives

are transformed to become more compassionate and caring (Hogan, et al., 1996).

RQ# 3) Do these relationships hold true when race/ethnicity and religion are

controlled? In the early phase of grieving both bereaved mothers’ and fathers’ elicited

similar spiritual coping strategies. For example, receiving and maintaining support from

friends and family, accepting the current difficulties of life by taking one day at a time

and hoping for a better future. Research studies have found that bereaved parents

described spiritual coping strategies that were helpful in coping with their grief included

sympathetic presence and reassurance from spouses, and caring actions of family, friends,

co-workers, clergy, and healthcare professionals. Spending time with family and friends

after their child’s death was also described by bereaved parents as spiritually helpful in

coping with their grief (Barrera et al., 2009; Meert et al., 2005).

The cultural, religious and spiritual beliefs used to cope with the death of their

infant/child may have influenced Hispanic mothers who had higher detachment grief

scores at T2 and PTSD at T1. Religious beliefs, which can be viewed as an individual’s

spirituality (Schneiders, 2003), can have different meanings for different traditions/

cultures; therefore, religious and spiritual beliefs may have negatively influenced

bereaved Hispanic and Protestant mothers’ grief response and mental health.

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The current study found that at three months following the death of their

infant/child spiritual coping strategies remains a strong predictor of reducing bereaved

mothers grief symptoms of despair and detachment but not bereaved fathers’ grief

symptoms. Despair is characterized by hopelessness, sadness and loneliness and

detachment is characterized by withdrawing an avoiding others. The current study found

that bereaved mothers and fathers grief differently. Bereaved mothers used spiritual

coping strategies for a longer time than fathers to deal with their grief. This finding

support other studies that have identified differences between mothers’ and fathers’

patterns of grieving. Lang, Gottlieb, and Amsel (1996) found that over time bereaved

wives continued to exhibit higher grief reactions than their husbands. Armentrout (2009)

also found that bereaved wives initially felt their husbands shared similar feelings of

grief, but five to six months after the death their spouses had moved forward with their

lives at a faster rate than the wives.

The use of religious and spiritual coping strategies were strong predictors of

personal growth for bereaved mothers and fathers at one month and three months after

the death of their infant/child. This is consistent with most other research studies where

bereaved parents describe a transformation with their lives. They became more

compassionate, caring and sensitive to the needs of others; they also became more giving

of themselves by reaching out to other bereaved parents (Armentrout, 2009; Lichtenthal,

Currier, Neimeyer, & Keese, 2010). These findings were also validated in conceptual

framework that described bereaved parents emerging from their suffering and begin to

reprioritize their values and to find meaning and purpose in this tragedy. It is possible that

personal growth in the early grief phase is unusual. In this study the average time before

120

the infant/child died in the ICU was one month which may have allowed the parents to

assimilate the death by saying goodbye to their infant/child.

Unlike bereaved fathers, bereaved mothers’ use of spiritual coping strategies

resulted in lower symptoms of depression and PTSD at T2. It is possibly that bereaved

mothers had greater levels of mental distress than fathers and the use of spiritual coping

strategies was beneficial in reducing their levels of depression and PTSD. Research has

identified differences in bereaved mothers’ and fathers’ level of mental distress, with

bereaved mothers having higher levels of mental distress at baseline that remained higher

up to two years post death while bereaved fathers level of mental distress decreased over

time (Logan & Murphy, 2005-2006).

Additionally, research studies have found that bereaved parents experience many

benefits associated with the use of religious coping to dealing with their grief and mental

health (Lichtenthal et al., 2010; Meert et al., 2005; Raingbruber & Milstein, 2007). In this

study religious coping was found to be ineffective in lowering bereaved mothers and

fathers symptoms of grief and mental health. Parents in this study placed greater reliance

on spiritual coping strategies to help cope with their loss.

Significance

Findings of this study contribute to the current understanding of religious and

spiritual coping strategies as predictors of bereaved parents’ grief responses, mental

health and personal growth, as it is the first study to focus on parents whose infant/child

had died in the NICU/PICU. The study’s diversity in parent race/ethnicity and improved

methodologic rigor make its findings more generalizable.

121

This study is one of the few to have sufficient numbers of bereaved parents of

different racial/ethnic groups to allow comparisons of Hispanic, Black, and White

parents’ responses to their child’s death in a NICU/PICU. The findings of this study will

provide valuable information about the use of religious and spiritual coping over time

that is representative of a minority population who has been under represented in

previous bereaved studies. The diverse composition of the study participants increases the

generalizability of the findings of this study beyond White bereaved parents. Unlike other

research on bereavement parents were recruited directly from the unit that their

infant/child died and from the state’s death records, decreasing bias inherent in recruiting

from other lists or settings.

The stress associated with the death of a child often disrupts bereaved parents daily

routine, relationships with family and friends and their ability to resume and function at

work (Barrera et al., 2009; Gibson, Gallagher, & Jenkins, 2008). The findings of this

study suggest that spiritual coping may assist bereaved parents to reduce the intensity of

their grief, depression and PTSD. A reduction in bereaved parents’ grief and mental

health symptoms may decrease the duration of their grief, help them function in their

daily lives and ultimately move forward with their lives as the pain associated with the

death begins to subside. Additionally, spiritual coping strategies were found to increase

bereaved mothers’ and fathers’ personal growth. Finding meaning and purpose in their

infant’s/child’s death, being optimistic about life and having new priorities and values on

what is important in life are positive responses to grief that can help to reduce the

development of complicated grief (Engelkemeyer & Marwit, 2008; Riley, LaMontage,

Hepworth, & Murphy, 2007).

122

The results of this longitudinal study provide a clearer understanding of the

differences in the use of religious and spiritual coping between bereaved mothers and

fathers over time whose children have died in the NICU/PICU. It also shows differences

in the use of religious and spiritual coping strategies between bereaved fathers and

mothers at different phases of their grief. The ability to recognize what religious or

spiritual coping strategies are helpful to bereaved mothers and fathers over time have the

potential to reduce the negative effect of grief on bereaved parents grief distress and

mental health. This study finding also provides healthcare professionals with guidance for

intervention and staff development in how to best help bereaved parents.

Limitations of the Study

There are several limitations to the study. At one and three months post-death,

parents were in early stages of grieving. This may have resulted in the non-significant

differences that were found for both mothers and fathers responses to the use of religious

and or spiritual coping strategies across time. Thus, these findings may not apply to

parents who are further away from their child’s death in time.

Bereaved parents were asked how religious or spiritual they were and how

important religion or spirituality was to them but it was not determined if their religious

or spiritual beliefs increase, decrease or stay the same following the death of their

infant/child. Having this comparative information may provide additional information

about the reasons for the choices bereaved parents make when using religious or spiritual

coping strategies.

Bereaved parents were recruited from the NICU and PICU but comparisons were not

made as to the different religious or spiritual coping strategies used by these parents.

123

Therefore differentiation cannot be made as to the effectiveness of religious or spiritual

strategies for bereaved parents whose infant/child died in the NICU/PICU.

In this study most of the bereaved parents reported spiritual coping, not religious

coping, as effective in helping them to cope with their grief and mental health. The

average age for these bereaved parents was early to mid thirties and it is possible that

individuals of this age may not be strongly affiliated to a religious group (Fowler, 1995).

As parent age was not controlled in this study it cannot be determined if age influenced

the lower use of religious coping strategies by bereaved parents.

Implications for Nursing

The findings from this research can be beneficial for nursing education and

nursing practice. The results from the study on the use of religious and spiritual coping

strategies by a diverse racial/ethnic group of bereaved parents provide NICU/PICU

nursing educators with additional pertinent information on the types of coping strategies

that are found to be beneficial to bereaved parents. Dissemination of this information in

the clinical areas to nurses and other healthcare team members will enable bereaved

parents to receive relevant and appropriate support following the death of their

infant/child.

Additionally, the interdisciplinary team of physicians, social workers, child life

specialist and additional personnel who are involved in palliative care in the NICU/PICU

should be informed, through continuing education on the importance of spiritual coping

in addition to religious coping. This information when used to help bereaved parents in

the NICU/PICU has the potential to minimize the symptoms of grief, depression and

PTSD that often accompanies the loss of a child.

124

Healthcare providers who provide counseling and support to bereaved families in

the community during their early stage of bereavement should also be educated on the

significant research findings of this study. Healthcare providers in the community should

also be aware of the differences that exist in the use of religious and spiritual coping

strategies between bereaved mothers and fathers at different times so as to further help

their bereaved parents move through the grieving process.

This new knowledge can also be used in the academic setting to prepare

undergraduate and graduate nurses on the benefits of spiritual coping and its effect on

bereaved parents’ grief mental health symptoms. Racial/ethnic and gender differences

and the use of different religious and spiritual coping strategies at different times in the

early stages of bereavement, as identified in the results of this study, should be used by

healthcare professionals to provide appropriate bereavement care to the NICU/PICU

bereaved parents.

Future research

Findings from this research study have provided implications for future research.

The responses obtained from bereaved parents at one month and three months are

applicable to parents in the early stages of bereavement. Further research is needed to

determine if any changes, whether negative or positive, occurred in bereaved parents’ use

of religious and spiritual coping strategies and the effect on their grief response, mental

health and personal growth in the later stage of bereavement.

Differences may exist in the grieving process between NICU and PICU parents.

The majority of infants are admitted to the NICU immediately after birth and for those

infants who do not survive they were never discharged home. In contrast, most infants/

125

children who have died in the PICU are older and have lived at home for an extended

period of time. Future research that specifically examines NICU/PICU bereaved parents

use of religious and spiritual coping strategies can determine if differences exists and

specific supportive spiritual care can be used to help bereaved parents cope with their

grief.

Another potential area of research is to explore the use of religious/spiritual

coping strategies by NICU/PICU parents in influencing their decision to continue or

withdraw their infant/child from life support.

Summary

This longitudinal study described differences in bereaved parents’ use of spiritual

coping strategies across racial/ethnic and religious groups, mother/father dyads and time

at one and three months after the infant’s or child’s death in the neonatal intensive care

unit (NICU) or pediatric intensive care unit (PICU) and tested the relationship between

spiritual coping strategies parental grief, mental health, personal growth for mothers and

fathers at one and three months post death. The results of this study provided new insight

into bereaved mothers and fathers use of religious and spiritual (non-religious) coping

strategies at one month and three months. Additionally, the results identified significant

predictors on the effect of bereaved mothers’ and fathers’ grief (despair, detachment and

disorganization), depression, PTSD and personal growth and their use of religious and

spiritual coping strategies. The results added new knowledge to the state of science about

differences between religion groups and between bereaved mothers and fathers use of

religious and spiritual coping strategies at one and three months. This new knowledge

should be used to help bereaved parents cope

126

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VITA

DAWN M. HAWTHORNE

EDUCATION DEGREE DATE MAJOR

Florida International University PhD Candidate in Nursing 2012 Research Miami, FL Florida International University Master of Science in Nursing 2000 Advanced Child Miami, FL (M.S.N.) Health Nursing Barry University Bachelor of Science in Nursing 1993 Nursing Miami Shores, FL (B.S.N.) West Middlesex Hospital Certificate 1978 Nurse Isleworth, England Midwife West Middlesex Hospital Diploma 1977 Nursing Isleworth, England

PROFESSIONAL LICENSURE AND CERTIFICATION

Florida, License Number RN 1429612, Expiration July 31, 2012

Critical Care Registered Nurse (CCRN), Expiration June 2010 (presently inactive for two years with option to activate) International Board Certified Lactation Consultant (IBCLC), Expiration July 2012 PROFESSIONAL EXPERIENCE Position Organization Dates Research Assistant (student) Florida International University 2008-present Miami, FL Family Educator/ Memorial Regional Hospital 2000-2010 Discharge Coordinator Neonatal Intensive Care Unit Hollywood, FL Adjunct Professor of Nova Southeastern University 2004-2005 Nursing Davie, FL

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Adjunct Professor of Florida International University 2000-2001 Nursing Miami, FL Staff Nurse Memorial Regional Hospital 1988-2000 Neonatal Intensive Care Unit Hollywood, FL PRESENTATIONS AND AWARD

Hawthorne, D, Brooten, D., Youngblut, J. (2008, October). Psychometric evaluation of th English and Spanish versions of the Spiritual Coping Strategies Scale. Paper presented at the 2008 South Florida Nursing Research Consortium conference, Boca Raton, FL. Hawthorne, D., Youngblut, J.M., & Brooten, D. (2009, February). Psychometric properties of the English and Spanish versions of the Spiritual Coping Strategies scale. Poster presented at the 22nd Annual Conference of the Southern Nursing Research Society, Baltimore. Hawthorne, D., Youngblut, J.M., & Brooten, D. (2010, October). The importance of religion and spirituality and the use of spiritual coping strategies by parents after a child’s ICU death. Paper presented at the 4th Annual South Florida Research Consortium: Best Evidence from Research: The Gateway to Excellent Care, Miami. Hawthorne, D., Youngblut, J.M., & Brooten, D. (2011, October). Grandparent health & functioning after a grandchild's death. Paper presented at the 5th annual research conference,” Nursing at the Helm of Research for Quality Practice,” the Nursing and Health Research Collaborative of South Florida, Miami. Hawthorne, D., Youngblut, J.M., Brooten, D., Hannan, J., Blais, K., & Seagrave, L. (2012, Februrary). Grandparent health & functioning after a grandchild’s death. In J.M. Youngblut (chair), Parent, grandparent, and sibling responses to child death in NICU/PICU. Symposium conducted at the 26th annual Southern Nursing Research Conference, New Orleans. 8/2/08 – 6/30/12, Fellow. Research Supplement to Promote Diversity in Health-Related Research to support Dawn Hawthorne, MSN, RN. National Institute of Nursing Research, NIH, 3R01 NR009120-S1, Total costs: $156,741. Main grant: "Death in the PICU/NICU: Parent & Family Functioning." J. Youngblut, PI. D. Brooten, Co-PI. RESEARCH ACTIVITIES 2000, Principal Investigator, Spiritual Care Practices of Neonatal Nurses (thesis research). 2009, Principal Investigator, Psychometric Evaluation of the English and Spanish versions of the Spiritual Coping Strategies Scale: A Pilot Study.